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Multiple Hereditary Exostoses

ejennc
ejennc
So a bit of a stretch I'm expecting... but does anyone have and/or heard of Multiple Hereditary Exostoses, sometimes called "Hereditary Multiple Osteochondromata." This is something I was born with and had knee surgery when I was 17 to remove some of the bone spurs around my knee joints. I was part of a study about this disease about 10 years ago as it is rare with only 1 in 50,000 having it. The doctor at the time said I also had some spurs on my pelvis and to reach out when I was ready to start a family. Honestly my husband and I had forgotten about this as it was so long ago, but with all the trouble we've been having TTC and looking at our options with IVF etc. we are wondering if MHE could be a factor in my low AMH and/or difficulty conceiving. Bit of a long shot, but not out of the question. Does anyone else have any experience with MHE and might we be onto something here? I'm waiting to hear back from my FE if he has any experience with other patients having MHE as well as the doctor who did the study 10 years ago to see if she can help shine a light on things with any more recent data and research.
Trying4ever
Trying4ever
Question: does this also cause one to be born without say...a vertebra??? The other day I was talking to an acquaintance and she told me what she had ( I honestly don't remember but it was a mouthful and sounded something like what you posted), but we talked about it and she said it was hereditary. Then another woman near us spoke up and said she had something similar!!!! She was born with some parts missing and some extra on her knees, hips and back. But she also said it was hereditary. My acquaintance knows DH and I can't have kids so we were talking about infertility and she claimed that it didn't not allow her to get pregnant and carry to full term...and the other lady has kids as well too.

Could be way off here, but bottom line, these two other women in my church described something similar and both had normal full term babies...although what they have is hereditary so their children must get special check ups like every 6 months.

I don't know if this helps you or makes you more confused! Maybe a specialist would be of more help.
ejennc
ejennc
Thanks for your post. I'm not sure if it is the same condition, but the more I've been researching the more "hereditary" conditions that seem to be out there. Definitely encouraging however to hear that people are having healthy babies even with certain conditions. I have a meeting with a specialist for my condition in the late fall (will take that long to get in!) and hopefully can have some more answers at that time.