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- Question 5 -- Christina Hughes, 08:34:05 05/28/02 Tue
If I had a sibling that became ill due to a genetic disease, I will have mixed feelings. On one hand, I would be so relieved that I myself was not sick. The downside would be that my brother or sister would be sick. I would feel as if they got the bad hand and that I should be miserable because I did not have to suffer. It would be difficult, but I would have to remember that no one can control who gets genetic diseases, at least at this time, and that it was not my fault that they got two different genes than I did.
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- TFB Question 2 -- Christina Hughes, 08:19:32 05/28/02 Tue
In my opinion, it is important to know whether you are a carrier of a gene because you can pass it on to your children. But from a health perspective, the knowlegde that you are a carrier is irrelevent. This is because a carrier of a mutated gene does not have any of the effects of the disease. Some one who is only a carrier of a recessive allele is not sick. But if it is discovered that the person has both recessive alleles, then they will show the effects of the illness. This knowledge is useful because with it a person can live their life avoidig situations that will worsen their conditions.
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- Question 5 -- Christina Hughes, 08:33:04 05/28/02 Tue
If I had a sibling that became ill due to a genetic disease, I will have mixed feelings. On one hand, I would be so relieved that I myself was not sick. The downside would be that my brother or sister would be sick. I would feel as if they got the bad hand and that I should be miserable because I did not have to suffer. It would be difficult, but I would have to remember that no one can control who gets genetic diseases, at least at this time, and that it was not my fault that they got two different genes than I did.
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- #4 -- Helena Tsourous, 08:26:33 05/28/02 Tue
Even though Sherry feels isolated because her sister does not carry the gene, she shares her disease with many people. I would provide Sherry with numbers to support groups where she could talk to others that have breast cancer. This might help her to realize that she is not isolated or alone. i would also suggest that she brings her sister with her so that Sherry could learn that her sister will support her throough the disease, even if she does not have the gwene for it.
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- Response to Question6 -- Bridgid Ryan, 08:24:47 05/28/02 Tue
Through the case study of Sherry and Lani, the reader realizes that disease does not solely effect its victim. The results of a disease study can provide emotional distress for the family as well. For Sherry and Lani, Lani feels "guilt," because she does not have the disease, but her sister does. This test was what brought tese sentiments
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- Response to Question6 -- Bridgid Ryan, 08:23:07 05/28/02 Tue
Through the case study of Sherry and Lani, the reader realizes that disease does not solely effect its victim. The results of a disease study can provide emotional distress for the family as well. For Sherry and Lani, Lani feels "guilt," because she does not have the disease, but her sister does. This test was what brought the disease.
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- #3 -- Hekena Tsourous, 08:20:50 05/28/02 Tue
Yes, a negative result can give someone a false sense of security. If they heed the advice if their doctors and maintain checkups as others are expected to do, then the information would be beneficial and could relieve some stress. If she is given the false impression that she is now immune to breast cancer, then the results of the test would be negative.
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- #3 -- Hekena Tsourous, 08:20:49 05/28/02 Tue
Yes, a negative result can give someone a false sense of security. If they heed the advice if their doctors and maintain checkups as others are expected to do, then the information would be beneficial and could relieve some stress. If she is given the false impression that she is now immune to breast cancer, then the results of the test would be negative.
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- TFB Question 2 -- Christina Hughes, 08:18:24 05/28/02 Tue
In my opinion, it is important to know whether you are a carrier of a gene because you can pass it on to your children. But from a health perspective, the knowlegde that you are a carrier is irrelevent. This is because a carrier of a mutated gene does not have any of the effects of the disease. Some one who is only a carrier of a recessive allele is not sick. But if it is discovered that the person has both recessive alleles, then they will show the effects of the illness. This knowledge is useful because with it a person can live their life avoidig situations that will worsen their conditions.
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- Response to Question1 -- Bridgid Ryan, 08:16:36 05/28/02 Tue
When disease ravages one's life and body, the victim often seeks controll. Sherry's revelation that she is participating int he study to gain controll seems a valid reason to enter. Patients can often want to impact on future sufferers of disease through participation. Health studies are very beneficial ways to enable victims of disease to seek good through illness/
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- Question #2 -- Meg Wahl, 08:08:59 05/14/02 Tue
Knowing that one carries the potential to affect another human being's life with such an impact is very important to society. This "head's up" allows for proper preparation and education regarding the subject of which one carries the gene. For some people, the risk of having a child with a severely debilitating or fatal disease is not worth taking and they would rather adopt a child. For others, just the fact that they know they could pass this gene on to their child is enough so they have the chance to learn as much as possible and prepare themselves and other family members for the possibility of this altered lifestyle. Just because one carries the gene for a disease does not mean that this person is affected, so in essence, one could argue that not knowing could be a startling surprise when the child arrives.
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- Question #5 -- chrissy tate, 08:36:44 05/13/02 Mon
If my sibling was spared from a genetic mutation and I was not, then I would feel partially happy. I would hate to see us both have to suffer, even though I would have rather seen us both been safe from the disease. I would probably feel slightly jealous that I had the disease and my sibling was normal, but I know my siblings would be caring and supportive. If the tables were turned and my sibling had a genetic mutation and I did not, I would feel guilty. I would feel bad that I had the chance to live a normal life and they did not, but I would still spend a lot of my time caring for my sibling.
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- Question #2 -- Nicole Saunders, 08:09:32 05/14/02 Tue
I think it does make a difference to know whether or not you carry a marker gene. It is beneficial to known if you are a carrier of a certain gene, especially when deciding to have children. Having a certain gene does not make a person "sick", it only shouold raise awareness of potential diseases that could be passed on to offspring. In managing health, genetic testing can tell you what diseases you have a chance of developing due to genes. You can learn ways of preventing such diseases if you learn as much as you can about them.
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- Question #5 -- Nicole Saunders, 08:17:02 05/14/02 Tue
If a sibling were spared of a genetic disorder and I was not I think I would at first have trouble with the information. I would be frustrated and confused. However, I would be happy that my sibling was ok and then focus on solutions rather than the problem. I know that my sibling would support me and try to help me. Overall, the news of having a genetic disorder would be devastating, but I would not wish it on my sibling, and I would trust him to help me through my disease.
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- Question 4 -- Ashley Schiavo, 08:07:28 05/14/02 Tue
I would counsel Sherry through this isolation by being there and telling her not to be mad at her sister, just like she has no control over her disease, her sister has no control over not having the disease. Telling her that life is to short to isolate yourself and show her that her sister loves her and feels very guilty for not having the disease.
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- Response to Question 4 -- Mary Flaherty, 08:12:37 05/14/02 Tue
Who can blame Sherry for expressing a feeling of isolation? Her sister's test results just came back and she tested negative. For one, she is worrying about her sister, but also she wonders and fears that she herself might also have this awful disease. I would suggest that Sherry see a counselor. This would help her to better understand and plan for her future. It would allow her to vent, and cope with this disease. She would also be able to talk to other women in the same situation, which might help her to break out of this state of isolation.
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- Question 5 -- Ashley Schiavo, 08:10:54 05/14/02 Tue
I would feel lucky but yet quilty for not having the disease while my sibling does. I would feel helpless and know that deep down, my sister/brother would hold jealousy that I was healthy and they weren't. I would, of course, be there for my sibling during it all. I would tell them I love them and wish that it was me instead of them. I would rather go through it, instead of them being put through it.
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- Response to Question #1 -- Meg Keenan, 08:10:36 05/14/02 Tue
Yes, I think a need for control an appropriate reason can be tested. I think that knowing about the disease and knowing what the symptoms and the treatment are, is a very good way to prepare youself. If you are diagnoised with a disease, at least you know what the disease is and what you will expect.
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- Question #4 -- Katherine McFadden, 08:07:00 05/14/02 Tue
It is only normal that Sherry feels isolated and remote. She was just diagnosed with a life threatening disease and her sister was not. I would tell Sherry that her sister could have had the disease but God chose her to have it because he knew she could handle it. I would also tell her that her sister was meant to help her through the tough time. She is not in it alone. although she may feel that way, her sister will be there with her through the entire thing.
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- Response to Question #4 -- Meg Keenan, 08:05:12 05/14/02 Tue
After learning that her sister tested negative, I would suggest that Sherry attend a counselor. There, the counselor would help her get out of the feeling of isolation. She could also talk to other women who are in the same position as Sherry. After hearing other women's stories, I think that she will be able to cope with what she is going through.
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- Response to Question 1 -- Mary Flaherty, 08:03:03 05/14/02 Tue
I think a need for control is a good reason to be tested. The more someone knows about the dieseae that they have, the better prepared they will be in combating it, and this will help them to make the best decisions possible for the future. I feel that a need for control is definitly an appropriate reason to be tested.
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- Question #3 -- Meg Wahl, 08:01:55 05/14/02 Tue
The fact that a genetic test specific to one type of cancer has come back to one negative could give one a false sense of security. Not only could this test not show varied types of genetic predispositions for cancers, but there are several environmental factors in cancerous infections. For example, inhaling substantial amounts of asbestos is a known cause of developing cancer. There are other known triggers of spontaneous cacner generation, so a genetic test cannot prove that somone will not contract a disease.
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- Question #5 -- Katherine McFadden, 08:01:24 05/14/02 Tue
I would be extremely upset if I had a genetic mutation and a sibling was spared. I would also be happy that my loved one would not have to go through the same thing that i was going to go through. If the tables were turned though, i would probably wish it was me that had the disease instead of my sibling. I would feel guilty for being spared of the disease.
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- Response to Question #4 -- Meg Keenan, 08:00:07 05/14/02 Tue
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- Quetsion #4 -- Lizanne Crotty, 05:04:11 05/14/02 Tue
Sherry is feeling isolated and alone because of a variety of reasons. It is not simply because her sister tested negative for the defective gene; rather for the most part she is terrified of her battle with cancer. It is important for Sherry to relieve some of this fright by understanding, herself, why she is really feeling alone and isolated. What I would then suggest for Sherry would be to visit a support group that is comprised of other woman who are also suffering from the same cancer as Sherry. I think that if Sherry knows that there are other woman fighting the same battle as she is, then she will feel less isolated. The support group, addition to provding Sherry with the support and understanding she needs, may also give her a confidence in the sense that she too can help other people with cancer.
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- Question #3 -- Lizanne Crotty, 04:57:50 05/14/02 Tue
Because of the fact that only a small percentage of breast cancers are caused by inherited gene mutations, negative result in testing can certainly give someone a false sense security. Depsite being free from the genetic marker, the person may still contract cancer from a variety of different sources. The precentage of contracting cancer from an outside source is most likely higher than that of inheriting the gene, even if it does run through one's family. Therefore, a person should not feel "safe" from cancer because they are not genetically predisopsed to this disease. They are still at risk becuase of the mass variety of sources of cancer.
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- Testing family bonds #3 -- Christina Finkenhofer, 19:40:47 03/13/02 Wed
Genetic testing can provide a false sense of security and a person being genetically tested for breast cancer should be aware of the possibility developing cancer despite the results. Although a person may not be geneticall predisposed to cancer, he/she are subject to developing cancer from many other sources. A person who finds that he/she is not genetically predisposed to cancer should continue to be screened for cancer due to the varying risks.
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- Family Bonds - Question 2 -- Amy, 20:31:35 05/13/02 Mon
From a health perspective, it does make a difference to know whether you carry a marker gene. Through obtaining this information, one can plan ahead, and gain insight into his/her future. Someone who possesses a gene is not considered sick. He/she has the potential of becoming sick, but until symptoms are shown, he/she is in good health. Genetic testing enables one to be made aware of his/her physical health. By being made aware of one's physical health, one can prepare mentally to fight the disease, as well as take advantage of opportunities that are presented to him/her.
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- Question 5 -- Bethann Worster, 14:53:02 05/13/02 Mon
If my sibling were spared a genetic mutation I would not feel angry, I would probably be grateful that at least one of us was spared the sufferig. Although it would not be fun dealing with the pain and suffering a disease would cause me, I think it would equally trying if I had to watch someone close to me suffer. Even though I would be grateful my sibling did not have to deal with a disease, I would probably feel some jealousy because I was the one with the "bad luck." If the tables were turned I would be just as supporive as my sibling was for me. I would also hope he would be somewhat grateful that I did not have to go through what he was going through.
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- Question 3 -- Andrea Felice, 17:10:48 05/13/02 Mon
Negative results from a breast cancer test can be a huge false sense of security because so many factors can cause breast cancer that the genetic tests can't pick up on. Though Lani may not have the genetic marker, her own DNA could mutate in her lifespan, possibly causing cancer; this mutation may not be recognized by the test. Also, if the test only picks up on inherited gene mutations, then it misses any non-inherited mutations, many which can result from environmental conditions. Many cancers are partially caused by poor environmental conditions, which the tests cannot always detect.
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- family bonds #3 -- Bridget Brady, 16:42:49 05/13/02 Mon
Yes, a negative result can give a person a false sense of security against cancer. There are several factors that cause cancer adn just testing negative for one factor does not mean that you will be excluded from contracting cancer. A person may have another mutation that could lead to contracting teh cancer tested for or another form of cancer. If Lani does contract cancer she will be in disbelief and this will make her ablity to handle the situation much harder.
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- family bonds #4 -- Bridget Brady, 16:37:34 05/13/02 Mon
It probably was quite a shock for Sherry to find out that her sister tested negative. Even though her sister was probably happy her sister's chance for cancer wa lowered the question was probably still in her head "then why me?" To help Sherry get out of her feeling of isolation she needs to be educated of other women who are facing ovarian cancer. Sherry shoul dprobably join a group for ovarian cancer patients so she can witness that she is not fighting this battle along and that other women are experienceing the same feelings. MAybe once Sherry realizes that she is not alone in the world she can lean on her sister for support during the difficult times.
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- Question #3 -- Blair Armstrong, 08:31:37 05/13/02 Mon
Because only a small percentage of cases of breast cancer are caused by a genetic mutation, Lani still has a chance of getting it. She expressed relief at the discovery that she is free of the genetic mutation, but this only provides her with a false sense of security. In fact, Lani may be setting herself up for extreme disappointment if she does contract breast cancer and her relief and security are shattered.
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- Respone to number 4 -- Meghan McCracken, 09:36:46 02/28/02 Thu
I wouls tell Sherry that she can't feel isolated and remote becasue she got the gene. It was a chance that she did get the gene. She needs to continue on her life just as she did before she found out her sister was negative.
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- question two -- cara vitale, 11:23:39 05/13/02 Mon
Knowing if you were a carrier of a marker gene could be very benefical in the health world. Oppertunity can arise for you to be used as a LAB RAT to help doctors have a better understanding of sicknesses, help prevent, or help cure. I wouldn't label a person who has a gene as "sick" because there is always a chance that person may not develop the sickness. But the person does have a chance of getting sick. Genetic testing can be a good head start on managing your health. A person can start to manage their lifestyle in ways which may prevent them from ever developing the sickness. For instance, they can partipcate in tests.
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- TestingFamily Bonds: Question #5 -- Clare Hughes, 08:40:17 05/13/02 Mon
I think that if my sibling was spared a genetic mutation that I had, I would be jealous and angry, but I think that I would be grateful that they were spared. I know that it would be difficult to be happy for them, especially when I was suffering so I would expect some lapses. If the tables were turned, I would certainly feel guilty and struggle with watching my sibling suffer. However, I would still probably be relieved that I was not as likely to get sick.
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- Question 4 -- MAREN MCBRIDE, 08:39:09 05/13/02 Mon
I totally understand Sherry's feeling of isolation. I think her feeling her very normal. I know I would feel the same. If I were to counsil her, I would probably introduce her to other breast cancer patients to refrain from feeling alone. Depending on her cancer, I would let her know it could be alot worse. As a sister, she should be thankful that her sister does not have to undergo the same as herself. Breast cancer is the most prominent cancer for women. Sherry is not alone. There are even walks such as Race For The Cure, which organizes money towards breast cancer research. Sherry may be unfortunate, yet she should not isolate herself.
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- Family Bonds #4 -- Ashley Kenney, 08:37:48 05/13/02 Mon
Although I understand Sherry's sense of isolation after finding out that her sister tested negative for the gene, I think it is important that she put things into perspective. If I were to counsel Sherry, I would try to help her focus on the fact that even though her sister has less of a chance for the cancer, she will still love Sherry and be there with her to help her through whatever may happen int he future. Sherry should be happy for her sister and remember that this new information does not mean she is alone.
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- Question #5 -- Blair Armstrong, 08:36:35 05/13/02 Mon
If i had a sibling that was spared of a genetic trait that I had, I think that I would be very confused. I would probably have a feeling of resentment towards my sibling as to why they were spared when I was not. Such a situation would place a strain on any sibling relationship. If the tables were turned and I was spared of a genetic mutation while my sibling was not, I would probably feel very guilty and not know how to respond to the situation.
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- Family Bonds -- Andrea Felice, 08:35:41 05/13/02 Mon
The need for control is natural human response when faced with life-threatening things like cancer. i don't blame sherry for believing that participating in the study will give her a sense of control in her life. The need for control should not be the only reason to get tested, but if it gets a person to the testing center then it's a good enough reason. Testing for what you have helps you to understand what you have so you can start a treatment and be able to keep track of the disease. Cancer is difficult to control, and testing is a great way to have some knowledge of what is happening and how the cancer is reacting to the treatments. Though tests cant find or prove every problem or disorder, it is a great place to start.
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- Testing Family Bonds: Question #4 -- Clare Hughes, 08:34:11 05/13/02 Mon
Sherry should not feel isolated. just because her sister may not have as high a risk of developing cancer does not mean that she cannot relate to her at all. Sherry and Lani should still be able to feel bonded. Sherry should understand that the feeling of isolation is natural reaction, but she has to try to stay open. The only reason that she would be isolated is if she shuts herself off. Lani can help her through her sickness if Sherry lets her.
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- Family Bonds - Question #5 -- Amy, 08:33:34 05/13/02 Mon
5. I would be grateful if one of my siblings were "spared" a genetic mutation; however, I would feel lonely and upset that I were not so fortunate. I would feel isolated and constantly ask myself the question, "Why me?" In due time, I would be able to cope with my misfortune and be thankful that my sister did not inherit the mutation. If the tables were turned, I believe my sister would act in a similar fashion - hurt, angry, and confused. Eventually, she would accept the truth and together we could fight the disease.
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- testing family bonds question #5 -- Colleen McKeown, 08:32:49 05/13/02 Mon
Honestly, I would be very bitter and I would wander "why me?" but on the other hand I would feel guilty if my sister was the one suffering with it and I got away easy, although it would be a relief.
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- Question #3 -- Bethann Worster, 08:32:08 05/13/02 Mon
A negative result can give you a false sense of security. I think many people would view their negative result as if they were free from any risks of cancer. However, there are many other factors that can cause cancer. People may tend to feel as though they are free from any possibilites of getting cancer when that is not true. Although there may not be a defect in that particular gene it does not mean that there is no possiblity that you will get cancer.
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- question five for breast cancer -- cara vitale, 08:30:46 05/13/02 Mon
If my sister was "spared" a genetic mutation i do not think i would really feel anger or lonliness. i would understand things happen all the time and everyone is different. instead of complaining about her being "spared" i would try to use my time more wisely by getting more involved in breast cancer research, trying to understand why it happened to me.
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- testing family bonds question #4 -- Colleen McKeown, 08:30:37 05/13/02 Mon
I would inform Sherry that she is not alone in her pain and suffering and that there are many other people going through what she is going through. She should be happy that her sister does not have to suffer also and keep hoping and praying that somehting will cure her. Never lose faith.
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- Question 1 -- Maren McBride, 08:29:30 05/13/02 Mon
Sherry claims she chose to participate in the study to gain "a sense of control in life." I understand her thought. However, I feel particpating did not give her control. It was a positive experience in that she can now continue exclusively battling her cancer. Now, she has no wonders, for she knows. Instead of gaining control of her life, she can not help but feel bitter towards her sister. She is now left feeling alone. The test left positive and negative results. Sherry never gained the sense of control she wished for.
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- Question #4 -- Chrissy Tate, 08:27:17 05/13/02 Mon
It is understandable that Sherry feels alone because she has breast cancer and her sister does not, however, she should feel thankful or relief because now she does not have to watch her sister suffer as well. Also Sherry needs to know that her sister will always be there to comfort and support her, especially now that she does not have breast cancer, she can give more care and attention to her sister's needs.
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- Family Bonds - Question #5 -- Amy, 08:26:13 05/13/02 Mon
5. I would be grateful if one of my siblings were "spared" a genetic mutation; however, I would feel lonely and upset that I were not so fortunate. I would feel isolated and constantly ask myself the question, "Why me?" In due time, I would be able to cope with my misfortune and be thankful that my sister did not inherit the mutation. If the tables were turned, I believe my sister would act in a similar fashion - hurt, angry, and confused. Eventually, she would accept the truth and together we could fight the disease.
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- Respose to question #4 -- Karen Tate, 18:58:08 03/03/02 Sun
Sherry's feelings of isolation are perfectly normal and acceptable. If she and her sister are close, then the knowledge that her sister has been "spared" and she has not is a difficult thing to handle. This test has put a barrier between them, so naturally Sherry feels a sort of separation from her sister. Sherry should probably seek counseling so that her feelings of isolation do not manifest inside of her because quite possbly, her negative feelings could effect her physical well-being. Her immune system could become weak due to her lowly feelings. She should definitely find a professional to talk to through her disease and share what she learns with her sister so that their relationship remains in tact through this difficult time in Sherry's life.
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- Question # 4 -- Sheila Taylor, 02:41:04 03/11/02 Mon
To counsel Sherry through her isolation I would tell her that although she may feel alone, Lani will always be there to support her. It is also important for Sherry to learn how to communicate her feelings and worries to her sister. Sherry may feel that Lani would never be able to understand the battle she is facing, but I am sure Lani would try. She needs to see past the fact that she tested positive and Lani tested negative. Shery should not let this drive her and Lani apart.
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- a daughter's tale, question 1 -- Morgan Oakes, 20:40:18 03/10/02 Sun
Now that Janet knows that she is at a very high risk of developing Alzheimer's she should definitely tell her husband, but I feel that she should wait to tell her children. Her husband should always be there for her, and then together they can decide a good time to tell their children. Something like this could be extremely devestating to a child, and while I think they should know, I do not believe Janet should be rash when she tells them. If Janet alters her life style and lives each day a little fuller and doesnt take advangtage of things she used to, this will rub off onto the entire family. Janet and her family can work together to live life to the fullest and not have any regrets. They can also look into treatment, because you never know what is in the process of being developed.
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- Testing family bonds #1 -- Christina Finkenhofer, 19:34:21 03/13/02 Wed
A need for control is an appropriate reason to be tested becase a person can pay specific attention and monitor their health more than a person who may not realize their risk. Also if a person thought they were high risk and end up having average or no risk at all, they will be able ease their fears. A person can take control once they realize their risk by making appropriate arrangements for treatment and health care.
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- A daughter's tale #5 -- Christina Finkenhofer, 19:23:19 03/13/02 Wed
Although it is impossible to force someone to seek professional help after finding out results of the test, genetic counselors should suggest therapy and provide access to psychiatric help. Since feelings of guilt and anger are inevitable, a person who seeks genetic counseling should be told beforehand the possibility of these emotions and if they are mentally prepared for the results.
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- A daughter's tale #1 -- Christina Finkenhofer, 19:18:24 03/13/02 Wed
Armed with the results of her test, Janet is able to take the appropriate measures and make arrangements for her care in the future. Her family can also decide whether to be tested themselves for their risk of developing Alzheimer's. The family can look into preventative treatment that may have been developed with new technology. Emotionally, Janet and her family can prepare for the possible stress of the illness and live each day fully.
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- A Daughter's Tale #4 -- Meghan McCracken, 05:20:12 03/12/02 Tue
Since Janet is considering suicide, this puts a great deal of stress and pressure on her family. They may feel that they have to constantly watch her and her physician may have to perscribe her antidepressions along with other medications that go along with Alzheimer's disease. If she kills herself, the family may feel regreat an guilt that they could have stoped her and now its all their fault that they didn't.
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- Question #7 -- Kelly McHugh, 17:20:49 03/11/02 Mon
I think that there are several good reasons for Janet to be tested for Alzheimer's. The first is that certain preparations can be made financially for her care when it becomes necessary; espeacially if her family is unable to care for her consistently all day everyday. Also it allows the person a sense of security and control so that they can make sure they do everything they need to while they are still fully aware of what is hapening around them.
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- A Daughter's Tale #1 -- Meghan McCracken, 05:13:46 03/12/02 Tue
I think that Janet can prepare her family by warning them how she may become. Perhaps they can all go to group therapy and learn about Alzheimer's disease. With her family informed, they can be better prepared for how to react to Janet's aging.
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- Question #4 -- Kelly McHugh, 17:03:45 03/11/02 Mon
I think that this is a selfish decision on Janet's part because it puts the heavy responsibility on her family of making the decision on whether or not to allow her to know the realities of her condition if and when it appears. They must decide whether or not telling her the truth will make Janet suicidal and if she does in fact harm herself, will make them feel guilty.
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- question #6 -- Sheila Taylor, 03:19:45 03/11/02 Mon
The appropriate role of a primary care physician in genetice testing should be more than just a doctor delivering results to a patient. They need to be informed about the disease that they are testing and they should know how to help affected people cope with the initial shock. It is not enough just to complete the test and deliver the results. Many of genetic tests detemine a person's fate, so doctors should be both informed and supportive.
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- Response to number 3 -- Jessica Bruno, 05:42:37 03/11/02 Mon
After recieving the test results and realizing that her children have inherited the alzheimer's gene from her I do not think she should inform her children of this. They are at such young ages, they do not need another burden placed on their sholders. I think that when they grow older they should Janet should inform them of their family history. Then, they can undergo genetic testing so they know their chances of developing the disease and their children's chances. Janet may want to consider telling older family members of her high risk for alzheimers. They have the right to know their risk, and may want to get tested to detrimine what the future may hold for them.
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- Response to number 1 -- Jessica Bruno, 05:36:45 03/11/02 Mon
Now that Janet has confirmed that she is at high risk for developing alzheimers she can prepare for the future. I think that she should tell her husband about the test results so he knows what may be instore in the future. But, I think Janet should probally wait to tell her children. They would be very confused and scared if they knew their mother was at high risk for a disease. Janet, with the help of her husband can learn more about alzheimers, see doctors and do research so they are prepared. Janet can also talk to her husband about how they will cope both emotionally and finacially.
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- Response to number 1 -- Jessica Bruno, 05:35:10 03/11/02 Mon
Now that Janet has confirmed that she is at high risk for developing alzheimers she can prepare for the future. I think that she should tell her husband about the test results so he knows what may be instore in the future. But, I think Janet should probally wait to tell her children. They would be very confused and scared if they knew their mother was at high risk for a disease. Janet, with the help of her husband can learn more about alzheimers, see doctors and do research so they are prepared. Janet can also talk to her husband about what they will cope both emotionally and finacially.
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- QUESTION # 3 -- Sheila Taylor, 03:09:51 03/11/02 Mon
I dont think it is fair for Janet to consider suicide if the "quality of life" is not maintained. This places entirely new burdens on her family, friends and physicians. It must be hard enough to deal with a frend/mother/patient that has such a high risk of developing a devastating disese, and Janet's consideration of suicide only makes it harder. Her family, friends,and doctors now will have to constantly monitor her feelings and well-being to make sure she is not planning her suicide. No one should have to do that.
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- Question # 5 -- Sheila Taylor, 02:59:56 03/11/02 Mon
If a siblng "spared" a genetic mutation and i was not, i know at first, it would be hard to deal with. I might be angry orjealous that I must suffer due the mutation and one of my siblings could have a normal healthy life. Yet, after i deal with the inital shock, i dont think that it would drive us apart. I am ver close with my siblings and i think we would be there to support each other. If it were the other way around, that i was "spared" and a sibling was not, i would feel terrible. I would try to support the sibling, but i know it would be very hard either way.
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- Question #3 -- Bridget Scott, 14:57:26 03/05/02 Tue
I think it would be difficult to decide whether or not to be tested in this case. It is simply a personal decision to know whether you have an extremely high percent chance of developing the disease or the same probability as anyone else. Either way, it is not 100%. Since breast cancer is multifactorial, it may give the person who tested negative for BRCA1 a sense of false security. It is important that Lani understands that there is still a possibility that she will develop breast cancer.
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- A Daughter's Tale: Question 4 -- Cassie Dyer, 10:36:49 03/10/02 Sun
Janet's implications of suicide when her "quality of life" slips is a complete and unnecessary burden on her family, friends, and doctor because they now have to stay on constant vigilance to make sure that Janet does not do anything too drastic. Janet's fear and anger is understandable, but the idea of suicide is a selfish thing. Janet does not consider how her actions will affect the people who care about her; all she is thinking about is how she can rid herself of suffering. With these thoughts, Janet's family and friends must know put their lives in the back burner and make sure that Janet is okay and not haveing suicidal thoughts. And if Janet goes into a depression, or if she does go through with suicide, then her loved ones must also go through the grieving process. Janet might commit suicide as a means to rid her family of the burden she thinks she is, but her family must then bear the tragic loss of Janet completely.
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- Question 4 -- Meg Strawhacker, 21:14:01 03/10/02 Sun
I think anyone who suffers from a debilitating such as Alzheimer's, the patient will try and keep a good quality of life. It may not be the best, but keeping happiness in balance with the suffering. I have no concept of what suffering from a fatal disease is like, but I can't imagine the feeling of wanting to commit suicide. I think Janet's friends and family should encourage her and always stay by her side. At times it would be really difficult and frustrating, but no one should feel as if they should end their life due to the disease. It is important for the family to struggle with the mother and help her suffering be less of a struggle.
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- A Daughter's Tale: #7 -- Cecilia Baldino, 19:23:21 03/10/02 Sun
There is only one person who decides what constitutes a good or bad decision, and that is the person who may be effected. In this case it was Janet's decision. The family and friends and physician can all guide her, and help her, but it is Janet's own final decision. The only good reason I think was to prepare herself and her family for the future, and what is to come of it. The bad reason, however, I think is all of the other things that come with this decision, In Janet's case, the results were bad, so this causes her family to have to watch her every move in case she does attempt to commit suicide. At the same time it can effect them in a positive way in that they will appreciate the time they spend together more now since they may not be able to in the near future.
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- Question 7 -- Meg Strawhacker, 21:07:45 03/10/02 Sun
I think it is entirely up to the person to decide whether or not they should be genetically tested. Some people may look at it as a way to get as much done as they can now, enjoy the time with their family and friends and accomplish things they always wanted to accomplish. On the other hand, someone may take the news a different way and think about things like suicide. It depends on the person and their perception of the disease. I think nothing can prepare a person for the news that would be given to them, but I think that they know better than anyone else how they will cope with not taking or taking the test. Not knowing could cause just as many problems as knowing. If you are constantly dwelling and wondering whether you have the disease, it may be causing more stress than is needed. I think it is up to the person with the guidance of family and friends.
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- Response to question #5 -- Karen Tate, 20:58:31 03/10/02 Sun
Genetic counselors should certainly be informed on ways to ease the pain and guilt that often accompanies genetic testing results. Since science is the main focus of genetic counselors, maybe the genetic counselors themselves should not be the ones delving out the therapy to upset patients, but these genetic counselors should most definitely work in conjunction with psychologists or other therapists because with genetic testing comes with a great deal of emotion that needs to be dealt with almost immediately. Medical professionals need to be able to at least recognize a patient's feelings after receiving his or her results so they can recommend some kind of further action such as therapy.
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- A Daughter's Tale # 4 -- Jacqueline Rogers, 13:08:44 03/10/02 Sun
Janet's desire to maintain her "quality of life," even if that means ending her life when she sees herself slipping places and extra burden on her family, friends and doctor. Now they not only have to monitor Janet's health to make sure she is healthy and they are doing everything they can in regards to treatment of her disease, but now they have to watch to make sure Janet doesn't perceive herself as being any less than she was before.
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- Response to question #4 -- Karen Tate, 20:45:45 03/10/02 Sun
Knowing that Janet would consider suicide if and when she sees her quality of life slipping, Janet's family, physician, and friends face a great challenge. Since everyone naturally has a different perception of high and low quality, they will need to become very much in touch with Janet's perception so they know what is an acceptable and an unacceptable quality. It will be a struggle for all those involved because they know that Janet wishes to live only a life with what she sees as quality, so they will probably be torn over what to do when she reaches that point beyond quality. Surely no one will want to see Janet suffer, but perhaps even more, no one will want to support her desire to take her own life. A great many people will suffer with either decision and nothing could possibly simplify the situation. Janet will simply need to be taken very good care of in order to maintain her high quality of life as long as possible.
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- a daughter's tale, question 4 -- Morgan Oakes, 20:43:26 03/10/02 Sun
Becaue Janet has mentioned that she would commit suicide, this places an immense amount of pressure on doctors, and expecially her family, becaue they will be spending the most amount of time with her. The doctor's must be extremely aware of her all the time, and always monitor closely the medication she is taking. Her husband and children must always be near her and make sure she doesnt slip into depression because this would be a step closer to suicidie. I feel that Janet should not be placing this burden on her family. It is more of a burden having them worry about her killing herself, than just taking care of her.
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- Question 5 - Daughter's Tale -- Kira Dubas, 17:51:52 03/10/02 Sun
I think that though it may be a natural reaction for Janet to be angry with her mother it is completely unjustified. Neither Janet's mother nor Janet had any control over their genes, which should have been properly explained to Janet when she learned of her genetic conditions. I think that in order for families to be relieved of some of these feelings of guilt and anger, genetic counseling should deal with some of the more personal issues, perhaps through psychologists if necessary. Medical professionals, after having decided to release this sort of information also need to decide how to help the patients emotionally after the information is released.
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- A Daughter's Tale: #4 -- Cecilia Baldino, 19:08:44 03/10/02 Sun
The burden of responsibility that would be placed on Janet's family, physician and friends would be indescribable if she chose to commit suicide. Even though she wants to maintain "quality of life" suicide is never an option. Both Janet and her family will suffer a great deal of pain (especially her family watching her suffer). But the best resolution is to stay alive. With all of the technological advances society encounters today, if Janet does not commit suicide, there may be a treatment of a cure for AD later. If she is considering committing suicide, this will effect her family by them monitering her perceptions of her health and well-being. I think it would also be better for the family to have Janet die a natural death when her body was ready, rather then her commit suicide, inflicting pain on herself, and something that the family could have possibly prevented. With AD, the family already knows that they cannot prevent it.
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- A Daughter's Tale: Question 7 -- Cassie Dyer, 10:25:37 03/10/02 Sun
Personally, I do not believe that it was a good idea for Janet to be tested for Alzheimer's, especially because there is no cure and it adds future burdens on herself and her family. Now, her family has to take responsibility for watching Janet's every move. Yes, helping Janet out in a bad time is good, but Janet should not make her family put their lives on hold because she wanted to find out if she had the Alzheimer's gene. Now that Janet knows she carries the gene, Janet and her family know how her life will turn out. This and Janet's negative attitude about the whole situation make it almost impossible for her, or her family, to enjoy the rest of the time they have together.
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- Question 4- A daughter's tale -- Kira Dubas, 17:44:40 03/10/02 Sun
I think that suicide as an option that Janet has considered would cause greater pain for her family. People with AD are not necessarily unhappy - the worst victims of the disease are thos who must watch their loved ones deteriorate. However, as medecine is continually improving, it would be more beneficial to both Janet and her family if she died of natural causes rather than suicide. If Janet's family is able to deal with her disease by understanding that she might not remember them - I think that they would be a lot happier to have her alive and with them rather than dead because of suicide.
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- Daughters tale question 7 -- colleen mcintyre, 17:45:20 03/10/02 Sun
Only the person who is going to be tested for any genetic disease has the right to make the decision whether or not they want to be tested. Janet had thought about it her whole life, and had many reasons for being tested. I cannot say that her reasons were bad or good. No one besides Janet can. Family members and friends must support a person being tested for a genetic disease. They must show their support if they really love them. Because Janet decided she wanted to be tested, it was a good enough reason.
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- daughters tale question 1 -- colleen mcintyre, 17:22:10 03/10/02 Sun
With this information, Janet and her family know that she has a 50% to 99% chance of developing this disease. She can live each day to the fullest, with her children, and her husband. They can prepare her medical care in advance, and tell each other they love each other every second they get. She can live her life the best she can.
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- Daughter's Tale: Question 3 -- Bridget Scott, 17:05:29 03/10/02 Sun
Alzheimer's is such a sad, frightening disease. Since there is no way to cure or prevent it, I know that I would not want to know what my risk is for developing it. Like Janet must me, I would worry about the future: who would care for me, the expenses, the emotional suffering it would put my family through. And it is awful to think that I wouldn't be able to know/appreciate it at the time. I think Janet should seriously evaluate her deciaion to be tested: was it worth knowing? Based on how she feels, she can make a decision whether or not to tell her children that they are at a high risk like her. My opinon is that this is a decision her children should come up with and make for themselves when they are ready. To me, it can't be cured so it seems the worrying wouldnt be worth the precious time it comsumed.
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- A Daughter's Tale: Question 7 -- Bridget Scott, 16:56:50 03/10/02 Sun
I think that getting tested for Alzheimer's disease is a personal decision that one makes for their own reasons, whether they are good or bad really is not up to us. The emotional stress of knowing that you have such a high risk of developing Alzheimer's effects both the person at risk his or her family. However, I think the family's stress mostly comes in when the person they love actually does develop the disease. Though I would not get tested simply to keep from any worry (because theres no cure and worrying about it before just ruins the time you do have and the results are never 100%), it is an individual decision.
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- A Daughter's Tale- Question 4 -- Kara Gagliardi, 16:35:13 03/10/02 Sun
In response to question 4, "Janet expresses her desire to maintain "quality of life," implying that she would consider suicide if and when she saw this quality slipping. What a burden of responsibility is thus placed on her family, physician, and friends to monitor Janet's perceptions of her health and well being?", I think that suicide is not the best way for Janet to ease the pain of herself and her family. Sometimes people consider suicide as an option when they feel like they cannot handel life anymore. I do not think that this is the best option. Even though Janet is sick, i believe that she can still maintain a good quality of life. It is basically up to her to make the best of her situation. Considering suicide can but guilt on the family and physician's part. They could feel guilty even knowing what she was planning on doing, and after it happened, if she ever did go through with it, they would have to live with the thought that maybe they could have had Janet in their lives just a couple more days, weeks, months...etc. No one wants to think that their loved one is going to die, let alone kill themselves, and i believe that this could be hard for her family to handel all of the emotional baggage that would come along with a suicide.
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- A Daughter's Tale- Response to Question 1 -- Kara Gagliardi, 12:45:21 03/10/02 Sun
IN Response to question one, "Janet has apparently spent her entire adult life preparing herself for Alzheimer's Armed witht he test results, how might Janet be better able to confront the risk to herself and her family? What can Janet and her family do with this information?" I think that with the knowledge she has, she should be able to live a better life up to the point that she gets it. Depending on what age she is, ther could be cures or treatments that could help her through this hard time. If she is older and does not have much time, the her and her family can prepare for what is to come. They know the side effects and since Janet has been through this with all of her family with her mother and father, then she will know what is comming. With that they wil be able to prepare for the worst and hope for the best. They should read up on the disease and prepare her and her family for what is comming so that they know what to expect. She should plan out how much and what she wants her family to do and then this way, her family would not have to worry about things like that when she gets the disease and they already ahve so much to worry about.
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- A Daughter's Tale # 7 -- Jacqueline Rogers, 12:35:28 03/10/02 Sun
I think it depends on the individual if there is a "good" or "bad" reason to be tested for Alzheimer's. In Janet's case, having seen her father go through Alzheimer's and knowing what she and her family went through, she felt it was a good reason to be tested to know what she was in for, and prepare her family. In another person's case, where they won't know how to handle the news, testing might not be the best option. So it really depends on the individual.
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- A Daughter's Tale: Question 3 -- Erin Hildebrandt, 11:19:49 03/10/02 Sun
I do believe that the children should be told of their genetic inheritance, but not until they are in their 50's. There is no reason to depress them over something that may or may not affect them much later in life. Family members should definitely have a choice in genetic testing! If someone does not wish to know about his or her genes, he or she should never be forced to know. However, when a couple plans to have children, they should definitely see a genetic counselor to determine if their children will have deadly diseases.
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- Question 1 -- Kristin Donohue, 06:44:46 03/10/02 Sun
Ironically, I did a seminar on Alzheimer's disease in my physiology class last semester. During my research, I learned about how caregivers and the afflicted manage this horrible disease. I would suggest to Janet that her and her family attend support groups which will better prepare themselves if Janet is diagnosied with Alzheimer's. Also, she should look into a retirement home when she becomes older in age that provides lifecare and support with Alzheimer's patients. With this avenue, much of the burden and stress resulting from caregiving will be taken off Janet's family and they can be assured that she is in a safe place.
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- A Daughters Tale: Number 2 -- Jessie Grasso, 11:04:41 03/06/02 Wed
If I was a counselor and a case like Janet's came in, I would tell Janet that she should not stress with this right now in her life. Janet should live her life right now, and not worry about a problem that will catch up with her in the future. I would tell Janet that she does not even know if she has the disease yet, that is if she were in the predetermination stage. I would tell her to prepare for the worst and hope for the best. I would not prep her up and try to get her hopes up, because she may in fact have the disease and it would not be right to tell her all along that her chances are low or something like that to try and make her feel better. I would tell Janet the straight facts and truth so that when she finds out if she has the disease she is not completely in shock and is somewhat prepared for the news. I would most importantly listen to Janet and help her to see that she has alot of life ahead of her and someday she may be faced with this disease but she should definately live up her life now. I would listen to her fears, problems or anything that will help her get through what she is feeling. Another important thing for Janet to do is to talk about this and not keep her feelings inside, because there are also others in her position that she could talk to. I would also suggest to Janets family that they could attend clinics on how to handle people with alzheimers, so they would be prepared to take care of her in the future.
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- Question 7 A daughter's tale -- Kristin Donohue, 06:57:39 03/10/02 Sun
I think there was a good resaon for Janet to be tested for Alzheimer's. Questioning whether or not one will develop the disease is mind boggling and results in a lot of stress and worry. Knowing that her father suffered from Azlheimer's, Janet realized that she too could be a possible candidate. Since she knows that she has a high risk of developing the disease, she can prepare her family for what may come and help guide them on how to take care of her. She experienced caregiving with her father and she can be able to teach her husband and children what she learned from her postion as a caregiver. I think that the paitnet has the final decision on whether he/she has a good or bad reason for being tested. Family, physicians, and counselors can help with the scientific information and advantages and disadvantages of being tested. But only the paitnet can decide for himself if they have a reason to be tested. I think it would be wrong if someone forced them or inhibited them from making that decision.
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- Question #4 -- Jessica Bruno, 05:40:46 03/05/02 Tue
I think that if I was in Sherry's position I would also feel very guilty and isolated--i would wonder why I inherited the disease and my sister didn't. If i were counseling sherry i would assure her that it is out of her hands and that her sister can help her get through this if she would open up and let her in.
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- question 3 -- Erin Hildebrandt, 16:52:37 03/06/02 Wed
When Lani is told that she does not possess the genetic marker for breast cancer she feels immediate relief. She probably thinks that the likelihood of getting breast cancer is significantly reduced. Statistically, there is still a pretty high chance that she will get breast cancer because there is a high chance for every female. She probably feels more relief than should truly be felt.
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- question 1 -- Erin Hildebrandt, 16:46:53 03/06/02 Wed
I do believe that gaining a sense of “control in life” is an appropriate reason to participate in a study. With knowledge of her body and an insight into her future, Sherry can prepare herself for future problems. With the information provided by the study, Sherry can do things to prevent breast cancer (remove her breasts.) If the results come back negative a patient knows that he or she probably does not have to worry about the disease, and can lead a happier, less stressful life.
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- A Daughters Tale: Number 7 -- Jessie Grasso, 11:23:10 03/06/02 Wed
I think that given there is no known cure for Alzheimers and knowing your family has the gene in them for the disease, I think getting tested is bad idea. I would not want to know for sure if I had the disease yet, until the time came for me to be forced to know. I think that Janet probably caused an extra amount of stress in her family and she may now feel depressed and helpless now that she knows she has the disease. But again the person who is experiencing the trauma, like Janet, should decide what is a good or bad decision. No one should tell them what to do, it is their decision and soley theirs. What they decide to do is a personal preference. If you are not going through what they are and are at a huge risk if you find out, then you can not determine if that person should find out what is in their future. The person who is in those "shoes" is the only person who can decide what decision is best for them. Each person will decide differently according to their own personal experiences and how serious the result of the test will have on their life. I can not give a definite response or criticize anyone for their choice because I have never been in a situation like that.
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- Question #1 -- Kaitlyn Missimer, 05:45:30 03/06/02 Wed
When Sherry said she was tested for a need of control in life I thonk she meant that she wanted to know which road she would be taking. I think she would rather have been prepared for the cancer instead of wondering if she would ever get it. Control in Life would not be my first priority of getting tested, but it does play a big part. I I was very worried about the disease I wouls want to know how to prepare for it. This is what Sherry meant in wanting to have control in life.
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- Question #4 -- Bridget Scott, 15:11:55 03/05/02 Tue
I think it would be really important to stress that people survive cancer all the time and that the test results are not 100%. Sherry has to consult doctors and make sure to take all the steps possible to ensure and maintain her health. i would also advise Sherry to seek counseling to help her deal with her feelings of grief and isolation. I would also tell Sherry to turn to her sister as a source of comfort and love. Despite the feelings of guilt and isolation, the sisters can certainly relieve the strain on their relationship by supporting one another.
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- Question #3 -- Kaitlyn Missimer, 05:29:04 03/06/02 Wed
When Lani says she felt a relief that she was free from the genetic marker, I do feel like she was jumping ahead a little too quickly. I would also be releived, but i would know in the back of my head that there is still the cahnce that I might develop the cancer. Lani would probably be very suprised and upset if she developed the cancer because of another reason rather than by inherited gene mutations. when someone is given the test it should be made very clear to them that it is not actual proof that the cancer will never occur. This will lessen the good feeling of security, but it will make people more aware of their health and warn them about things that could happen.
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- Testing Family Bonds: Number 5 -- Jessie Grasso, 08:32:23 03/03/02 Sun
If one of my siblings were "spared" and I had the disease, I would be upset. I would probably be very jealous that my sibling did not have the disease. I know I would definately sulk and there would always be that question in the back of my head of Why I got the disease and my sibling didn't. Even though I would be very upset, I would never let my sibling know how truly upset I was, because it would just make them feel more guilty. If the tables were turned I know I'd feel very guilty. I think it might be even worse for someone in that position because they have to watch their sibling go through everything, knowing it could have been them. Both situations are very tough to handle.
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- Testing Family Bonds: Number 4 -- Jessie Grasso, 08:53:45 03/03/02 Sun
I would tell Sherry that her feelings of isolation are only normal. I would tell her that maybe God wanted her to have this disease because God knew that Sherry was stronger and was the braver sister. There is always a reason for things like this and even if she does not figure out why she has the disease right now, it will come to her later on. I would tell her she should talk to a professional about this and try to go to some grief group sessions to help her. I would tell Sherry if she talked to others in the same position it would help her come to terms with the fact that she has a disease and that there are others out there who are experiencing the same thoughts and things as she is.
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- Question Number 6 -- Elizabeth Powers, 17:49:02 03/05/02 Tue
Just because you don't have the BRCA 1 marker doesn't mean you will never get ovarian or breast cancer. If you do have BRCA 1, you may never get cancer. These diagnoses could lead people to take extreme measures. Some one with BRCA 1 might contemplate suicide, thinking that they would rather die than have to suffer through cancer. Similary, if some one with out BRCA 1 did in fact get cancer, they would most likely be infuriated.
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- Question Number 5 -- Elizabeth Powers, 17:43:18 03/05/02 Tue
I would feel jealous if my sibling was spared a genetic disease and I was not. It would be a cruel twist of fate, I don't think I could stop myself from thinking "What if I had been born later, would I have been able to by pass this disease?" At this same time, I would be thankful that my sister would not have to suffer through the disease. I do think that human nature would cause all of us to wish that we hadn't been born the "unlucky" child.
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- Question #5 -- Beth McKinney, 17:22:06 03/04/02 Mon
If a sibling of mine was "spared" a genetic mutation, I think I would feel the same way that Sherry does. I would feel very hurt and wonder, "why me?" But there comes a point when you must realize that there are somethings in life that are nobody's fault. The fact that I inherited a genetic mutation cannot be blamed on anyone-which could cause more anger. If the tables were turned and I was the "spared" child, I would probably feel very strange. I would think that my sibling would have hard feelings towards me and it could hurt the relationship we have.
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- question 4 -- Beth McKinney, 17:18:13 03/04/02 Mon
I think if I was in Sherry's position I would react the same way in which she did. Knowing that you have a disease that could lead to your death is a very scary thought. A possible more threatening thought is the fact that no one else in your family, at this point in time, is going through the same ordeal you are. This definitely could lead to the feelings of being alone and lost. You have no one to share this experience with and no one who truly understands what you and your body are going through. If I had to counsel Sherry through this ordeal I would have to tell her to do as much research as she possibly can on the subject. This way she will realize and understand the doctor's orders and know what is happening inside her body. She would always have to live her life to the fullest and not take any second for granted. She must continue to lead a normal life and know that it is not her sister's fault that she does not have the same disorder.
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- Response to question #5 -- Karen Tate, 21:04:26 03/04/02 Mon
I would feel relieved if my sibling was "spared" because I feel like the guilt of being the one spared would be more difficult to live with at times than the actual disease itself. Maybe I am just saying that because I know how bad guilt feels and I do not know how it feels to have this disease. I would, however, feel terribly defeated if I tested positive. It would be such a let down. Knowing that one of us was "spared" and the other one was not could make our relationship somewhat awkward because one person would definitely be feeling guilty for testing negative, while the other would be feeling sad for testng positive. If the tables were turned and I was spared, I would feel a sense of gratitude but an even greater sense of guilt, even though the results were completely out of my control.
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- Question r -- Meg Strawhacker, 21:34:31 03/04/02 Mon
I think it is only human nature for Sherry to feel a little bit of anger toward her sister. I think that if that happened to me in my life, I would be angry just because of the pain and suffering I would have to go through. I would not blame it on the other sibling, but I would be jealous that she was healthy. If it were the other way around, I would feel guilt. I would feel guilty because I know my sister has to go through pain and suffering that I could be going through too. Genetics is a game of chance that could alter the lives of the victim and his/her friends and family.
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- Question #1 -- Jessica Bruno, 05:36:04 03/05/02 Tue
Yes, I think that a need for control is a valid reason to be tested. Sherry wants to know the future holds for her so she is able to plan and enjoy the rest of her life. The testing provided Sherry with the information that she had an alteration.
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- Testing Family Bonds # 3 -- Jacqueline Rogers, 14:00:30 03/04/02 Mon
Because the genetic marker for breast cancer is responsible for such a small percentage of breast cancers, being tested negative for the genetic mutation is somewhat of a false sense of security. In one sense, you do not have the mutation that dramatically increases the chances of having breast cancer, but on the other hand you now enter the pool with every other woman who has no apparent cause for breast cancer, and no genetic warning.
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- Question 4 -- Dominique Green, 15:54:15 03/04/02 Mon
I would probably just try to listen to her when she wanted to talk about her disease or even just complain. I would try to encourage her to talk to her sister about it because she probably wants Sherry to feel comfortable in talking to her even though she doesn't have teh disease. I would try to explain to her that her sister feels horribly and guilty. I know if I were the one with the disease I would just want someone to ask how I was and maybe go to some kind of counciling with me. I would want anything to know that I wasn't alone.
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- question 1 -- Morgan Oakes, 18:01:56 03/04/02 Mon
I do believe that a need for control is an appropriate reason to be tested for a genetic disorder. Wondering and worrying all the time if you have a certain genetic disorder can be extremely frustrating. Sherry probably wanted control in her life for many reasons. If she knew she had the gene for the disorder, she could choose not to have children, or she could obtain treatment that may prevent the disorder from becoming prevalent. These are both forms of control that could make living her life a lot easier. Simply not knowing is sometimes the hardest thing a person may ever have to go through.
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- Question 6 -- Meg Strawhacker, 21:45:26 03/04/02 Mon
It is not completely positive or negative when you get the test results back. If their is an alteration in the gene that causes breast and ovarian cancer, there is 70% chance that you will develop the disease. This test is a good way to see if you are at risk, but not a good way to brand yourself a victim. However, on the flip side, if you receive the test results back and you do not have an alteration in the gene, that does not mean you are in the clear. Only a small percentage of breast cancer is transferred genetically. That leaves a wide percentage of people who develop the disease due to other causes. There is no black and white in this situaiton and it is best to play it safe and be checked out.
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- Question 6 -- Kristin Donohue, 17:36:46 02/27/02 Wed
I think Barbara meant by saying,"a postive result is not always the worst of news in the world and, conversely, a negative result is not always the best news in the world" is whatever the outcome is of the test it has effect on a patients' perspective of their situation. After discovering a postive result, some patients may come to accept their condtion and aspire to reach some good out of their disease. In Sherry's case, she at first felt angry and lonely but came to understand that having this mutation can be postive. She decided to become a genetic counselor because she felt that her personal, first-hand knowledge can put her into the same perspectives as her clients and explain to them the effect it can have on their lives. Also, a person tested postive may also gain a wider appreication of their life. They may become closer to their family and friends and live the rest of their life to the fullest. Obviously, hearing a negative test result would be good news, however, it may not. People may feel guilty like in Lani's situation because they were spared but possibly their sibling wasn't. This feeling of guilt may cause the bonds in relationships to deteriorate and possibly break.
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- Question 5 -- Meg Strawhacker, 21:35:49 03/04/02 Mon
I think it is only human nature for Sherry to feel a little bit of anger toward her sister. I think that if that happened to me in my life, I would be angry just because of the pain and suffering I would have to go through. I would not blame it on the other sibling, but I would be jealous that she was healthy. If it were the other way around, I would feel guilt. I would feel guilty because I know my sister has to go through pain and suffering that I could be going through too. Genetics is a game of chance that could alter the lives of the victim and his/her friends and family.
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- Question 5 -- Kelly McHugh, 19:32:51 03/04/02 Mon
If one of my brothers or sisters was spared a genetic mutation, but I was afflicted with it, I don't think that I would feel any bitterness towards them just probably a sense of lonliness like Sherry feels. I would probably feel releif that they were spared. If the tables were turned and I was spared I think it would make it more difficult to deal with, since I would feel guilty watching my borther or sister suffer while I sat by and watched, completely healthy.
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- Question 4 -- Megan Johnston, 19:23:42 03/04/02 Mon
I would tell Sherry that it would be okay and to know that even though her sister tested negative, she will still be there to support her. I would also tell her that there are many advancements being made concerning cancer and the treatment of it. She is not alone in the world, and there are many other women who suffer the same mutation that she does. I would try to get her connected to some of the other women who have been diagnosed with ovarian cancer so that she could talk to them and be able to express her emotions to them and be understood. I would let her know that she could vent to me about what she was experiencing and I would be there to console her. Finally, I would remind her that even though her sister has not been diagnosed she will still be there to support her and she is not alone.
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- Question 5 -- Megan Johnston, 19:14:14 03/04/02 Mon
In response to question 5, if a sibling of mine were "spared" the genetic mutation and I was not, I would feel very alone like Sherry. I think I would naturally feel a bit of anger even though I would know it was not my siblings fault that he or she was spared. I would wonder why I was the one chosen to have the mutation rather than my sibling, or why either of us would have to be given it. I would be frustrated that just one tiny mistake could have such a great impact on my life. If I were spared the genetic mutation and my sibling was not, I would also feel a bit of anger knowing how close I am to my siblings. I would also feel a bit of relief though, but I think I would quickly try to repress my feelings of relief and just try to focuz on supporting and comforting my sibling.
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- question 4 -- Morgan Oakes, 18:58:12 03/04/02 Mon
I would first of all tell her that she had no control over herself having the gene and her sister not having it. It is completely random and it could have been the completely opposite. I understand why Sherry would feel isolated and remote. She's feels all alone because the only person that knows what she might have to go through will not have to go through it with her. She always thought that Lani and she would work through it together, now she must accept that Lani will have to just support her from the sidelines. Even though Sherry at this point probably understands how genes are passed on, I would explain it to her further, and hopefully I would be able to make it clear to her that it was just by chance that she got the gene and Lani didn't. I would also try to tell her that I am positive that Lani will always be there for her, and she probably feels horrible right now too.
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- Question 4 -- Kelly McHugh, 18:53:50 03/04/02 Mon
Sherry most likely feels isolated and remote because her sister is not experiencing the same pain that Sherry is because she now knows she is likely to die tragically from breast cancer. I would counsel her by assuring her that her family is there with her for comfort and that although her sister does not share her fate, she is experiencing the same pain knowing that her sister is in danger of this disease.
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- Question 1 -- Kristin Donohue, 17:15:40 02/27/02 Wed
In response to the first question, I feel that in the process of deciding to be tested for a genetic disorder many reasons and concerns must be thought over carefully. In Sherry's case, she chose to participate in the study because she wanted to gain a sense of control in her life. I think that is a legitmate reason for being tested because by knowing whether or not she will develop breast cancer she can start act accordingly to her health. She can begin preventative measures to limit the chances of developing breast cancer when she reaches 70. If the results are negative she can breathe a sigh of relief and can concentrate on beating her ovarian cancer. Unfortunately in her case, she tested postive for the mutated gene. Only she can control how she reacts to her result, the test can only provide the facts. If a paitent that is questionable about having a genetic disorder, I feel that it is their personal decision and I can respect whatever choice they decide to follow.
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- Testing Family Bonds #6: -- Cecilia Baldino, 13:39:10 03/04/02 Mon
Barbara Biesecker says that a positive result is not always the worst news in the world and, conversely, a negative result is not always the best news in the world. In saying this I think she meant that when receiving a positive result you may appreciate life more. Even though you may be diagnosed with a certain disease, in this case breast cancer, you may begin to live life to the fullest. You may also start taking risks in the things you do. In this case, Sherry became a genetic counselor to help others who are in the same situation. Therefore, her positive result is in turn helping others. Also, a negative result may be bad because that person could have been spared and feel guilty for thier sibling who was not. In this case Lani was spared, but unfortunately she feels guilty that her sister was not spared and has to face all of the challenges that go along with breast cancer. Now Sherry and Lani do not have the same bond anymore.
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- Question 2 -- Kara Gagliardi, 17:03:47 03/04/02 Mon
In response to question 2," From a health perspective, does it make a difference to know whether you carry a marker gene? Is somone who has a gene sick? What does genetic testing mean for managing your health?", I think that it is pertinent to know whether or not you posses a marker gene. If a couple wanted to reproduce, I think that they should know whether or not they have the chance of passing the marker gene on to their child. If it is a life threatning disease then that should be taken into account when having a child. Someone with a marker gene is not sick but simply carries that marker gene. Once the disease develops, if it ever does, then the person may be considered sick but until then only posses the gene. Genetic testing is pertinent for managin you health. There are certain foods and drugs that can help to prevent or ease the genetic disorder that one might have. Also, if you know that you have the marker gene, then if any new cures or treatments for the disease are discovered then they can be taken into account.
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- Question 5 -- Kara Gagliardi, 17:16:46 03/04/02 Mon
In response to question 5, "How would it feel if a sibling was "spared" a genetic mutation, but you were not? What if the tables were turned?" I would say that no one can really say exactly what it would feel like if it never actually happened to them. I can only imagine. If I got the gene for a genetic disease and my sibling was spared, I cannot say that I would feel mad or evny towards them. I think that I would be happy that they did not get the marker gene, and could live a happy healthy life. I would hope that I could go on with my life like nothing was different and never feel bad for my self; never have self pitty. However, I think that if the tables were turned and my sibling had the gene and I did not then I would feel bad and sort of bad for my brother or sister. I had the same chance of getting the disease and I didn't. I would probably question why it worked out that way more that i would if I had the gene and they did not. I would try to help them out the best I could, not only because I care for them and want to make life better, but because I think I would feel a little bit of guilt towards the person that they got the "bad gene" and I did not.
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- Question 5 -- Kara Gagliardi, 17:14:37 03/04/02 Mon
In response to question 5, "How would it feel if a sibling was "spared" a genetic mutation, but you were not? What if the tables were turned?" I would say that no one can really say exactly what it would feel like if it never actually happened to them. I can only imagine. If I got the gene for a genetic disease and my sibling was spared, I cannot say that I would feel mad or evny towards them. I think that I would be happy that they did not get the marker gene, and could live a happy healthy life. I would hope that I could go on with my life like nothing was different and never feel bad for my self; never have self pitty. However, I think that if the tables were turned and my sibling had the gene and I did not then I would feel bad and sort of bad for my brother or sister. I had the same chance of getting the disease and I didn't. I would probably question why it worked out that way more that i would if I had the gene and they did not. I would try to help them out the best I could, not only because I care for them and want to make life better, but because I think I would feel a little bit of guilt towards the person that they got the "bad gene" and I did not.
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- Question 5 -- Dominique Green, 15:37:12 03/04/02 Mon
If my sybling was spared a genetic mutation, I would automatically feel a sense of jealousy. I would be happy for my sybling but at the same time confused. I would wonder why I had to be the unfotunate one and I would have a hard time comprehending that that person actually felt bad that they were the spared one. I would try my hardest to be happy for them. If the tables were turned I would feel a huge sense of guilt. I would probably wish that I was the one with the disease and would do my best to do anything to make the situation easier for my sybling.
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- Testing of Family Bonds: Question 3 -- Cassie Dyer, 11:32:08 03/04/02 Mon
I think that genetic testing, especially for breast cancer, can bring about a false sense of security for a person who is tested negative. There is that chance that Lani will not develop breast cancer because she does not carry the gene, but the number of women who contract breast cancer through a gene is extremely minute. The majority of cases of breast cancer are not caused by genes. For the most part, Lani is not completely safe for developing breast cancer. Her chances for getting breast cancer are only the slightest bit less. However, this news that she does carry the breast cancer gene may give Lani that false sense that she is more protected from breast cancer than she actually is. Lani should not feel invincible because there is that larger chance that she will get breast cancer from another cause.
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- Question 4 -- Colleen McIntyre, 15:27:49 03/03/02 Sun
I think it would only be natural for Sherry to feel isolated and remote. She might feel that her sister would never be able to understand, because she tested negative. I would suggest to Sherry to go to support groups, where she can find people that understand. They could help each other. However, I would also tell Sherry to invite her sister to come every other session. I am sure that her sister wants to understand, and be there for her. That way, she can be apart of Sherry's life, and battle, but also let Sherry express her feeling without holding back.
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- Testing of Family Bonds: Question 3 -- Cassie Dyer, 11:44:35 03/04/02 Mon
I think that genetic testing, especially for breast cancer, can bring about a false sense of security for a person who is tested negative. There is that chance that Lani will not develop breast cancer because she does not carry the gene, but the number of women who contract breast cancer through a gene is extremely minute. The majority of cases of breast cancer are not caused by genes. For the most part, Lani is not completely safe for developing breast cancer. Her chances for getting breast cancer are only the slightest bit less. However, this news that she does carry the breast cancer gene may give Lani that false sense that she is more protected from breast cancer than she actually is. Lani should not feel invincible because there is that larger chance that she will get breast cancer from another cause.
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- Testing Family Bonds # 4 -- Jacqueline Rogers, 13:59:08 03/04/02 Mon
If a sibling were "spared" a genetic mutation, and I was not, I am sure I would have feelings of jealousy and anger that I was afflicted with the mutation rather than them. However, I am sure that my feelings of happiness and relief for my sibling not being affected by the mutation would override the others, and I would focus on my own well being, not on why I was "chosen" to have the mutation.
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- Testing Family Bonds #5: -- Cecilia Baldino, 13:52:21 03/04/02 Mon
If my sibling was spared a genetic mutation, but I was not, I know my immediate reaction would be why? I would wonder why my sibling and why not me? I would also feel angry. I do know that things do happen for a reason, and God does have a reason why my sibling was spared and I was not, so I would just have to accpet it. I would also be happy for my sibling. I think I would also apperciate life more, knowning that I may not have long to live. If i was spared, and my sibling was no, however, I would feel horrible. I would constantly feel so much guilt, and not know what to do about it. I also would probably be slightly relieved as well, knowing that I do not have the disease. But at the same time, I know that there is still a chance that I would get the disease, just not geneticly.
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- Testing Family Bonds: Question 6 -- Cassie Dyer, 11:52:55 03/04/02 Mon
I think Barbara Biesecker meant that there are some gentic tests that determine whether or not you carry a gene for something good or beneficial. If the test was positive, you carried the gene, and that would be beneficial. If the test was negative, you would not be a carrier and that could lead to future health problems. Genetic test result are not always positive=bad and negative=good. There are instances where the opposite is true. There is some evidence of Biesecker's theory in the case of Sherry and Lani. The results came back as Sherry being positive for a bad gene and Lani being negative for the same gene. But the results were not the best. Instead of relief for Lani, she was over come with guilt. The news also isolated Sherry from her sister because they did not share the gene and it appeared that Sherry was jealous and upset that the news for Lani came out negative. These results did not bring the best and worst news.
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- Testing of Family Bonds: Question 3 -- Cassie Dyer, 11:35:05 03/04/02 Mon
I think that genetic testing, especially for breast cancer, can bring about a false sense of security for a person who is tested negative. There is that chance that Lani will not develop breast cancer because she does not carry the gene, but the number of women who contract breast cancer through a gene is extremely minute. The majority of cases of breast cancer are not caused by genes. For the most part, Lani is not completely safe for developing breast cancer. Her chances for getting breast cancer are only the slightest bit less. However, this news that she does carry the breast cancer gene may give Lani that false sense that she is more protected from breast cancer than she actually is. Lani should not feel invincible because there is that larger chance that she will get breast cancer from another cause.
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- Testing Family Bonds: #5 -- Joanna McKee, 09:52:31 03/04/02 Mon
If a sibling was "spared" a genetic mutation and I was not, I would first feel confused. Why would God choose one of us over the other? Why me? The questions would be innumerable. However, after time, I think I would be thankful that it was me and not them. They already have so much going for them. My one sister is pregnant now, and she should be a healthy mother. Then, after this realization, I would try to console my siblings if they felt any guilt and explain it was not their fault in any way. I would then take action similar to that of Sherry by working to try to improve the lives of those around me with the time I had left. If I had been the one to be spared, I would feel very guilty. I would have trouble taking my own advice above, and I would do all I could to help make my sibling's life easier and happier.
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- Testing Family Bonds: #6 -- Joanna McKee, 09:38:44 03/04/02 Mon
Sorry about the message..or lack of...below. But in response to Barbara Biesecker's opinion that a positive result is not always the worst news and a negative result is not always the best news, I completely agree. For example, only a small percentage of breast cancers are caused by inherited gene mutations. Therefore, there is a chance that Lani could still suffer from breast cancer, and she would have been given a false sense of security. Also, Lani feels guilt by knowing the results of these tests which is not really fair to her, because she had no part in this decision. As far as Sherry is concerned, she felt the initial anger and isolation from hearing the results of these tests. However, she proceeded to take courses in genetics and psychology to become a genetic counselor. She has taken a negative situation and turned it into a positive one.
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- Testing Family Bonds: #6 -- Joanna McKee, 09:12:20 03/04/02 Mon
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- QUestion 5 -- Colleen McIntyre, 15:24:53 03/03/02 Sun
If my sister was spared in a genetic mutation, and I was not, I would cry of happiness. Of course, I would ask why me? but just because it is me, that doesn't mean because I have it, she does not. She was lucky, but I know that she would be there to support me. If the tables were turned, yes, I would feel guilt. But my sister would tell me that I shouldn't, because it had nothing to do with me. I know she would be right. However, I would be there to support her, and love her just as she would do the same for me. It would be tough, but it would definaltly bring us together
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- Response to number 5 -- Meghan McCracken, 09:40:10 02/28/02 Thu
If i found out that my sister was spared the gene and I wasn't, I would be upset. I would feel like " why did I have to get the gene... how come all of us couldn't be spared?" Then after all my sulking and my pity party, I would realize tht it was just chance and that i need to do all I can to help myself. If she got the gene and i didni't i would again feel bad for her and myself. Wondering how I got spared. But i knwo al ittle part of me would be happy that I didn't get the gene. ( as mean as that sounds)
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