Kennedys Disease Community
Anyone with KD in your 20's/30's?

This topic can be found at:
https://kennedysdisease.groupee.net/eve/forums/a/tpc/f/8581031121/m/7507049996

01-27-2023, 03:42 AM
Young
Anyone with KD in your 20's/30's?
I'm a 26 yo male in the Bay Area who has been experiencing increasing symptoms in the past two year (periodic, but intense neck/body/hand cramps, mild hand tremors, mild muscle weakening although I'm still healthy, able-bodied and active).

I've scoured the internet for communities of people living with KD and the only place I found for people with this disease is in this forum. While I would love to talk with anyone who can relate to what I'm experiencing, a lot of the posts I've seen on here are from people in their 50's with more advanced symptoms.

I was wondering if there is anyone in their 20's/ early 30's who is in this forum and who is open to talking? I'm down to chat with anyone in this forum in general, but it would be great to talk with someone whose early in their KD journey who wants to exchange stories and support.


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Aside from that, I wanted to say hello to you all! This disease is terrifying and I'm learning how to navigate all of this with grace and optimism. I don't know what the future holds, but I want to become an active participant in this forum when I can. Feel free to reach out if you need to talk

-Y
01-27-2023, 11:02 AM
Bob Heitzman
Have you confirmed the KD diagnoses with a genetic test?

BTW There is a KDA Facebook group that is more active than this forum. Doesn't work as well as this forum, but...


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email:rheitzman at gmail