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Date Posted:19:46:20 10/19/07 Fri In reply to:
Janet
's message, "Nephew with PKD" on 13:29:36 10/16/07 Tue
Hey there Janet!
I think that it is great that you are trying to help your nephew and niece get information. PKD is something that I believe is beginning to become a bit more heard of. Like I stated, I understand you and your family's confusion. I, like your nephew, am young. I will soon be 23 was diagnosed with PKD when I was 17 the summer before my senior year of high school. I knew to start getting tested because of the heredity of the disease. Being my grandmother had it as well as her twin sister (who died the day after I was born due to complications during surgery)I knew of the disease but didn't really understand as much about it as I do now until I began researching it for the main fact that I wanted to know what I was up against. I am one of those people who likes to know everything I can about things, especially if they are affecting me or a loved one. One of the main factors that came into play with my diagnosis was that I had constant high blood pressure even at my young age. My urologist then decided to run a CT scan and renal ultrasounds (along with other tests such as urinalysis and blood tests) largely because of my family history. Thus led to where I am now. Near 2 years ago I found an amazing website www.pkdcure.org that has a wealth of information along with the medical updates and developments that are on the horizon for us with PKD. You can even set it up to receive email updates and a free PKD Progress magazine-type thing in the mail... I subscribed to both trying to stay on top of my game. With your nephew as young as he is (near my age) there is a lot of hope out there. When the disease is caught at a younger age, there is more preventative measures that can be taken to try and take care of your kidneys before a lot of major damage occurs, as I understand it. I was also told by my nephrologist (who is awesome) that my blood pressure medicine not only keeps my pressure managed but also protects my kidneys. I figure they need all the help they can get, so I try not to harm them any more than they already do themselves. Also-I learned that anything that contains guarana in it (this is found lostly for what I have noticed in energy drinks) causes extra strain on your kidneys. I now check the ingredient labels on anything that I think may contain it.
I hope that I have been helpful in some way. If you want feel free to email me at samiam.always@hotmail.com
Good luck finding more information,
Samantha
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