steelangler18 said:hey,
has anyone here actually been diagnosed with hereditary multiple exostosis? I'm looking for someone who's lived through it firsthand rather than just reading about it in some textbook.
thanks
hi there
I've been dealing with this condition since I was seven years old.
In the US, this isn't studied enough, and you'll find plenty of doctors who are completely out of their depth when it comes to what they're actually looking at.
If you want to talk specifics, feel free to reach out and I can walk you through my experience.
My advice is to get answers as soon as possible, especially if it's caught early, because that's really the only window where you might be able to manage the impact.
Once it becomes systemic, it’s like trying to catch lightning in a bottle—there just isn't much help left to find.
It became systemic for me because back when I was a kid, the doctors in our local hospital didn't have the slightest clue what was happening with my joints, let alone how to treat it.
By the time I was 18, I had to go under the knife to fix an area where the exostosis was messing up my gait.
You can reach me at
eminaema@gmail.com
