Hereditary Multiple Exostosis. Looking to connect with others diagnosed with this rare hereditary condition please.Do you know anyone?

[PinkSand]

Do you know anyone with this condition?

I'm looking to connect with others whom have been diagnosed with this rare and painful hereditary condition v

I shall keep bumping this thread occasionally.

In my family it comes down from my mother in laws line.
My mil, husband, brother and sister in law, one niece and my daughter all seem to have it.
My daughter is the only one it seems to have affected badly. She's had to have a few operations. It doesn't seem to affect the others to much - just the odd bumpy bone.

I’ve just been told that I have this in my foot. It’s at the base of my third toe and I can’t walk properly. I suspect I may have it elsewhere. It runs down my mother’s side. I’ve had problems with my hearing for the last 12 years and I think this maybe the cause. Ear canals are often affected.