Veterans with Kennedy’s Disease

I published an article the end of last year on a Canadian veteran who was turned down for VA benefits.  If he had ALS he could  receive benefits, but not if he had Kennedy’s Disease.

This week I received an email from a U.S. veteran with a similar story.  He is being treated at the ALS Clinic and V.A. Spine Center, but when he applied for disability benefits he was turned down.  This man is working with the Paralyzed Veterans of America and hopes to appeal the decision.

In the previous article, I wrote:

"… since ALS is the primary misdiagnosis for those of us living with Kennedy's Disease, the link, in my opinion, between the two is very strong.  I can easily say that 50-70% of us are originally misdiagnosed with ALS.  I have always called Kennedy's Disease the “poor man's ALS” because our progression is slower and life expectancy is close to normal.

ALS affects the upper motor neurons, while Kennedy's Disease affects the lower motor neurons.  However, many of the symptoms are closely related and that is why it is often misdiagnosed.  (Note: It wasn’t until the late 1990s that a conclusive test was made available for Kennedy’s Disease)

I believe this might be an opportunity, however, … something that he needs to investigate with the Veterans Administration.  There might even be a veterans association that can provide some advice and counsel.  They might also be able to recommend an attorney that has experience with these type issues.  This could open the door for several men living with Kennedy’s Disease to receive veterans' benefits should it be approved."

Often appeals like this are difficult to win, but that doesn’t mean we shouldn’t try.  I would be willing to write a letter from the KDA to the Veterans Administration expressing the similarities in symptoms and the often subsequent misdiagnosis of ALS.

If you are a veteran, or know a veteran, with Kennedy’s Disease and are interested in determining if V.A. benefits could be made available for men with Kennedy’s Disease, please let me know (comment below or email).  There is strength in numbers (the greater the number the better the opportunity).

As always, I look forward to hearing from you.