Hereditary Multiple Osteochondromas

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

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 💜

#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 💜