My name is Delores and I live in Saskatoon, Saskatchewan, Canada. My family has quite a few members that have been diagnosed with Kennedy's. My mother comes from a huge family of 12 and many of them were females and carriers. I have 5 known cousins who have the disease but were never diagnosed until after my oldest brother was diagnosed about 10 years ago. In my family, I have 3 brothers with Kennedy's and now, my 28 year old son, was just diagnosed earlier this year. When my brother was diagnosed, I also got the blood work done to see if I was a carrier and unfortunately I tested positive. The genetic counselor offered a lot of support. My son who is diagnosed felt that he might have had the disease as well when he started noticing tremors and muscle cramping. That is when he told his doctor about the hereditary disease and got tested. According to the neurologist, he is the youngest known with the condition. So, the neurology team is studying him. He has had many medical appts since....He is taking it much better than I am..I guess because he "knows". He said the "not knowing" was the worst part of it...but because there are too many of our family members with this, he was more accepting of it.
This is One SUPER Organization and a Non Profit one at that. When I was diagnosed, in 1999 there was NO Information available at all. A very scary spot to be in. I had never heard of anyone with this problem. The KDA web site was a source or real information and even stories of other guys with the same problem. All of a sudden I was not alone, and also the in formation about the research going on gave me hope. After I attended my first conference I felt much better. Seeing tthe varing degrees of how the disease impacts everyone differently.
Review from Guidestar
When my husbands brother was found by the doctors to have Kennedys, I went on the site KDA (kennedys disease association) to see if my husband could have it. It helped to tell about the testing they do to find out if you have KDA. You can have a DNA done. My husband had the testing done over 6 years ago and he now knows what to expect with the disease he has. They have all the information you will need in one spot and at your fingertips. Most people like my husbands brother are misdiaginosed with Lou Gehrig's (ALS). But with the KDA site we found out different. It is a very helpful site with loads of information. JoAnn
Review from Guidestar