Multiple Hereditary Osteochondromatosis (MHO)
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I have the disease as well, although pain isn't severe but I still feel it. I have multiple " extra bones" in my left ankle, knees, and wrist. Not to mention in my back, shoulders, rib, and collar bone. At times I won't be able to type because of my wrists. I was forced to participate in gym because my teacher didn't believe my pain. It's a serious disease that people should take seriously....
711burgerking 1 month ago
@chrissys31 Hi Chrissys31- My name is Allie and I work for NORD. The National Organization for Rare Disorders is dedicated to helping the nearly 30 million Americans with rare diseases, and the organizations that serve them, through programs of education, advocacy, research, and patient services. We have a full disease report available for free on our site. You have to register and then you can view 2 full reports a day.
afreitas55 1 month ago
let me ask you, do you get any form of social security for this? I have a son that is 16 and he has had it since he was 12 but just got diag. about 2 yrs. ago. He has had 4 surgeries for them on his legs and arms so far. What do you take for the pain or do to make them better? Can you make some more videos about what you do for all this...please. What do you do for school far as a education and writing? Help me please if you could it is hard to get lots of info with others with it as well.thanks
chrissys31 1 month ago
Hey Stacey,
I really commend you for taking the time to share your story. I'm an adult who was born, like you, with MHO: I had surgeries as a kid and painfully remember how much I hated every part of my disease. I'm in my thirties now, and the symptoms have calmed down a bit: my experience as a child led me to my current career as a special education teacher, and I use my disease as a touchstone for kids. It CAN get better. It can be part of the strength of who you are. My best to you!
noavail4 5 months ago
my son is 16 and has this also and he hates it, he used to be a big sports person and it really bums him out. Maybe friend him on facebook so you guys can talk? His name is Patrick Poole and he has a ton of them everywhere and has had 3 surgeries in past yr. now. He is sick of being almost bound to the house. Healing from a surgery the scarred tissue formed around his tendon in his big toe and locked it up so he needed surgery for that too! Good luck stacey.
chrissys31 7 months ago
Stacey, can you please contact me, my daughter (3) was just diagnosed with MHO and her doctor made it out to be nothing. I am now freaking out a bit reading up on it and listening to you.
Hers (as far as we know) is spontaneous, as neither her father nor I have it.
Thanks,
Christa
hothamcox 7 months ago