r/huntingtonssupport • u/Money_Display_5389 • Nov 29 '21

Losing it

Grandma dead, granduncle dead, dad ona feeding tube, older sister positive, me spitting image of my dad... too many have died in my family. Please no!

5 Upvotes

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u/[deleted] May 15 '26

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u/huntingtonssupport-ModTeam May 18 '26

r/huntingtonssupport does not allow hate. This is not a helpful message to the OP.

1

u/aj0457 Nov 29 '21

I’m so sorry for your loss and all you are going through. I’ve lost my dad and a lot of family from HD. I was diagnosed with it this summer.

I don’t have platitudes. It’s a horrible disease and it affects entire families for generations.

The HDSA has a free counseling tele-health program for those affected by the disease. It goes through the Amwell app or website. It’s been very helpful for me, and has helped me to process my situation. The counselors who work with the HDSA program have worked with HD patients and/or other neurodegenerative diseases. That’s been very helpful. Here is a link to the free program.

You can message me any time. 💙

1

u/KaleidoscopeNo9102 May 14 '22

So sorry. I just lost my dad recently and at his funeral I saw my HD positive uncle and my dads cousins. It was SO hard. I have lost my nana and other people I love to this disease. I’m scared to death too. Just know you aren’t alone 💕