Are there any teens or young adults with HD here?

Hirschsprung's Disease
#1

Hello, I’m trying to get some help for my daughter about HD.

She is 19 years old now and has had HD since 7 months old. She has had a loud constant growling all her life and I know it bothers her more than she tells me. When she’s in class and it starts its hard for her to concentrate. I was just wondering if anyone here has this and how do you handle it at school or work?

And when you get the growling do you have the urge to use the bathroom also?

I appreciate if anyone has any help to offer–

Thanks so much

#2

Hi there,

I am 21 years old and too am seeking young adults in the same position as me!

Throughout school, sixth form and university I had the same problem. My friends were partially aware of my situation but it was a continual embarrassment for me.

Unfortunately I have no advice to offer, I usually have a hot water bottle on me which helps the pain, and muffles the sound a bit!

Feel free to contact me, I would also love to speak to your daughter if she is willing, I am having huge trouble finding people of my age to talk to about it!