Sunday, June 3, 2012

Knowledge is power

Fortunately for all of us living with a rare medical condition, the internet has become a tremendous resource for seeking answers to our questions.  Unfortunately, not all of the information available on the internet is accurate and it is important to validate what you read.  With quality information at your disposal, you can make more intelligent and less emotional decisions.

Approximately three times a week either the KDA or this blog receives an inquiry concerning Kennedy’s Disease. The subjects most often asked about are:

  • Is there a test for Kennedy’s Disease? If so, where can I be tested?
  • I am concerned that I am a carrier, is there a test for women that might have the disease?
  • I am experiencing the following symptoms. My doctor doesn’t believe it is Kennedy’s Disease, but everything I read points to the disease. Do you think I should see another doctor or demand that I be tested for the disease?
  • Do you know a doctor in my area that is familiar with Kennedy’s Disease?
  • My husband is really struggling with the disease and refuses to talk about it. Is there anything I can do to help?
  • Do you know of others in my area that have Kennedy’s Disease? If so, how can I get in touch with them?
  • Can a carrier experience symptoms like a man?

There are times I do not have the answers and have to ask a member of our Scientific Review Board (SRB) for assistance. Ed Meyertholen, our biology professor, and the doctor members of our board are very supportive and have helped many people by answering their more technical and medical questions about the disease. And, every time I contact a member of our SRB, I learn something.

So, keep your questions and comments coming. They are all appreciated.

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Please feel free to comment. By taking a moment to share your thoughts you add much to these articles. The articles then become more than just something I said or believe. In addition, by adding a comment, you might just be helping the next reader by sharing your opinion, experience, or a helpful tip. You can comment below or by sending me an email. I look forward to hearing from you.