Tuesday, November 29, 2011

The word is slowly getting out there

I find it interesting and heartening that Kennedy’s Disease is becoming more familiar to the younger generation. Within the last couple of years I have received emails from high school and college students in Sweden, Germany, Spain, Brazil, California and Oregon that were preparing reports on Kennedy’s Disease and needed additional information. This is good news because the more people that know about this disease, the better.

Also, over the last two years at least seven videos have been published on YouTube concerning the disease.

word of mouthTell others your story

Word of mouth is still one of the most efficient ways to get our message out there. It is more personal. The KDA has brochures available that can be given to your doctor. These are the same brochures that were distributed to over 10,000 neurologists in the United States. If you would like a brochure(s), just let the KDA know how many you would like by sending them an email (info@kennedysdisease.org) with your address.

I know that many of us who attend MDA clinics often spend time with medical students letting them poke and prod as we teach them about this DNA defect. Of the twenty-five plus future doctors I have worked with over the last ten years, not one knew about Kennedy’s Disease.

Sharing your medical records

I also keep copies of all my medical records and tests. When I  getting the word out move or switch doctors, I take the file with me for the first visit and go over the disease’s background, recent tests (blood, DNA, etc.), my symptoms and the results of clinical trials. I have noticed that the more I engage my doctor up front, the more willing he/she is to support me as the disease progresses.

I feel the more people that are aware of this disorder, the better the understanding of what needs to be done to manage the symptoms today and eventually help find a treatment.

So … let’s get the word out!

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