Hereditary Multiple Osteochondromas

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Hereditary Multiple Osteochondromas
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The Waiting Game

My appointment just got cancelled again due to COVID, it’s the fourth time this has happened.

I have a rare bone disease and I had an operation in 2019 on my right forearm. Due to administrative error I never got to see my surgeon post surgery. In fact I got removed from the hospital system even though I am a life long patient.

It took me months to get a referral in and an appointment rescheduled, and then the first wave of COVID hit and everything was cancelled. The appointment has then been rescheduled twice more both of which got cancelled last minute or made into a Telehealth call (which doesn’t suit my case as my surgeon needs to physically examine me to figure out what to do next)

I truely don’t mind waiting if it’s for the safety of everyone. Only two things bother me...

1. The operation didn’t go great and my arm has been causing me chronic pain since then and has been effecting my mobility to do day to day things

2. This waiting period doesn’t even go towards the wait list waiting period, so even once I get on the wait list for an operation I’ll have to wait up to a year before it gets done.

I’ve already waited one year, eight months and two weeks, how much longer will I have to be patient for??? #HereditaryMultipleOsteochondromas #hMe #MHE #bonedisorder #RareDisease #Hospital #Operation


New and awaiting diagnosis

Hi all! New here and happy to have found this app. My name is Alison and I’ve had a long history of health issues. I had my right tibia removed at 17 for ostechondroma. In 2019 I began having what we thought were seizures but was later diagnosed as chronic migraine that presents as stroke.

This year, I had surgery to remove stage 4 endometriosis, deep infiltrating endometriosis stage II, and partial frozen pelvis. In the midst, I began genetic testing to seek out potential for cancer. I came back with results of high risk for breast cancer (awaiting post-Covid meeting with a doctor about preventative mastectomy) and probable connective tissue disorder.

I am traveling across multiple states via plane to see a recommended adult geneticist for CTD in February and would love any tips on what to expect. A silly one: my appointment is at 11, should I plan to stay all day? I’m going in really clueless. What will they test for? I have a good amount of symptoms: hypomobility (can’t straighten arms, bleeding gums with no gingivitis, collapsing veins). My endo surgeon said she “saw signs of tissue disorder” but I do not know what that means.

Thanks, all! #Endometriosis #MixedConnectiveTissueDiseaseMCTD #HereditaryMultipleOsteochondromas #Stroke #Migraine

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Can we make it #MHEandWe to show how WE fight MHE?

I have a #RareDisease called #MultipleHereditaryExostoses (also known as #HereditaryMultipleOsteochondromas or #HereditaryMultipleExostoses ) and truthfully my MHE doesn’t just affect me! Even though I have the diagnosis, my family has ways had to deal with the same traumas I have had to, including the #medicalgaslighting and #Ableism that has filled my life since day one.

Instead MHE and Me, let’s know it’s a WE thing. It’s bigger than just me 💜

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#HereditaryMultipleOsteochondromas affect every single person who loves the one with the genetic disorder; we need to change the narrative to be a WE thing, and not a ME thing 💜


It’s been really nice out lately. And I have been wanting to go out and be active but I can’t. My #HereditaryMultipleOsteochondromas have been really bad in my hip. I can’t walk or stand that long. It’s been rough.