Any adults with HD on here

Hi there, this one of very few sites i have encountered relating to Hd. I am an adult of 24, but have never really talked to anyone who has had the disease as it’s obviously very rare. I still have long term problems wondering if they are normal or not, and wondering if there was anythingi can do about it.I would like to ask questions as to every one elses long term effects of Hd.

Does anyone know of experts to talk to or ask questions? Would anyone with experience be willing to answer questions?


My hubby grant has long hd he also wants to chat – please message me on my profile.

Hello Jon,

I am 36 yrs old, and was diagnosed with Long Segment Hirschsprun'g Disease after only being few weeks old. I have add some difficulties as I get older. Please email me @ and would love to answer any questions or just to chat

Hi Jon,

I am 34 years old with HD and am willing to answer any questions you have. Send me a private message.


Hello Jon. I am 34 and have HD and it has affected me in many ways. I have
been looking for other adults with HD. I have never talked to anyone else
with it, and would love to start an adult support group.

Please send me a private message and we can talk more.

My boyfriend does

Does anyone know of ways to help his constant going to the bathroom?

Bed comforters and sheets that are easy to clean?

Help his bowls form solids?

Any other pieces of advice that I can do to help him make this easier? I know it frustrates him and can shoot his ego.