Rare Disease Day 02/28: Multiple Osteochondromas #SEBDareForRare

IMG_20170228_093406_160At 18 months old, I was diagnosed with a rare bone disorder when my parents’ growing concern for my delay in walking brought them to the family doctor. I was sent to Sick Kids hospital to see a specialist, who told my parents I had a bone growth disorder. They didn’t know much about it, as I was one of the only patients in Southern Ontario with MHE.

I am also the first person in my family to have Multiple Osteochondromas (or Multiple Exostoses, or MHE as it’s commonly referred to). My MHE is a “genetic mutation”, because as the genetic doctor said…everything has to start somewhere.

I had my first surgery when I was seven years old. This surgery wasn’t as easy as my doctors thought it would be, as complications arose due to a bleeding disorder. I bled from the bone, and my doctors had a hard time stopping it. I required an additional two surgeries after the original–the second surgery was to remove the cast and make an incision from the inside of my knee all the way down to my ankle to drain the blood. The third surgery was to stitch everything back up again.

I didn’t know the “official” name of this disorder until I was in grade seven, when my family doctor recommended that my parents and I check out a support group for people living with the same “bumpy bone” disorder as me; MHE and Me. Through this group, I made friends who knew exactly what it was like to live with this chronic pain disorder, to have surgeries and feel isolated from our healthy peers.

As it stands today, I have had over 25 surgeries. I’m not sure what the exact number is as I stopped counting several years ago. Not a day goes by where I am not in pain, and I do my best to manage my pain with medical marijuana and Nabilone (a synthetic cannabinoid used for neuropathic pain among other things). While this treatment, thus far, has proved to be the most effective for me, I’m still not pain free.

Today is Rare Disease day, and I took the denim challenge along with my two boys to raise awareness. It is my hope that one day, with research, we’ll be able to better treat patients of MHE and other rare diseases.

Leave a Reply

Your email address will not be published. Required fields are marked *