My Nonprofit Reviews

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.

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