I have Multiple Hereditary Exostoses, a condition in which people develop multiple benign bone tumors called osteochondromas. The number of osteochondromas and the bones they’re located on vary among patients with this disorder. The bone tumors are not present at birth, but 96% of affected people develop multiple osteochondromas by the time they’re twelve years old.
Osteochondromas typically form at the end of long bones and on flat bones. I have these bone growths on my shoulders, my arms, my fingers, my hips, my legs, my ankles…I even have one (or maybe two) on my rib cage.
These growths can disrupt bone growth and cause disturbances in hands, arms, legs, even toes. Multiple osteochondromas may result in a limited range of joint movement, pressure on nerves, blood vessels, and the tissues surrounding the growths. Sometimes, it can put pressure on the spinal code too. Naturally, with these pesky little tumors causing so much trouble–it can and often does result in chronic pain.
Osteochondromas are typically benign, but these tumors can become cancerous. It is estimated that people with MHE have a 1 in 20 to 1 in 200 lifetime risk of developing sarcomas.
My parents noticed my first “bump” when I was 18 months old. It was on the back of my left shoulder. I was a rare genetic mutation, meaning that nobody else in my family had MHE (a fact confirmed by the genetics doctors at the hospital when I was pregnant with my first born and everyone in my family went for testing). Back then, surgery was the only treatment.
I had my first (of many) surgeries when I was in grade two. I was just seven years old, and during that surgery, my doctors made the unfortunate discovery that I also had an unknown bleeding disorder. My first surgery ended up being more of an ordeal because of that, and I required an additional two emergency surgeries to stop the bleeding on my bone that occurred when the doctors removed the growths.
Truthfully, I don’t remember much about that surgery, except bits and pieces. I remember waking up and seeing a hot pink cast on my leg. I remember how it felt like my entire leg was going to explode, like the cast was so tight that it was squeezing everything. I remember the look of fear and uncertainty on my parents face when the doctor explained about the bleeding, and I remember fading out before that second surgery.
In the end, I survived that surgery–and many after it. I experience daily pain because of my disorder. Standing, walking for long distances, and even sitting at my desk and writing causes me pain, thanks to one bone growth in my wrist that was pushing my radius and ulna apart. I got that growth removed in November of 2015 and it still causes me agony today. The strain it put on my tendons is irreparable, and I’m not allowed to lift over twenty pounds. If I fall, I have to remember not to catch myself with my hands, because my body weight exceeds how much pressure my wrist can take.
I’m riddled with nerve and tendon damage. I have a cane, a walker, crutches, and braces on stand-by for the really bad pain days. Between my bleeding disorder and my stomach, the most effective way for me to treat my pain is with Nabilone and medical marijuana. It doesn’t erase the pain completely, but it helps me push through enough to function and it doesn’t irritate my stomach.
Both of my sons’ inherited my MHE, and they already experience their fair share of bad pain days. So far, we’ve been able to put off surgery for the time being, but my youngest may be looking at having his first surgery within the next year or so. He has an osteochondroma growing on his flexor digitaorum sublimis that ultimately will push his radius head out of socket if it’s not removed.
I know what the future looks like for them, and while it scares me at times…research as come a long way since I was a kid.
When I was a child, my doctors referred to MHE as “bumpy bones”. I didn’t even know the actual name of my disorder until I was in grade five or six. Research has made leaps and bounds since then. For example, Professor YU Yamaguchi’s study may lead to the development of a new drug to reduce the number of osteochondromas forming on developing bones, which could mean less surgeries and less pain for people with this disorder, and the MHE Foundation is working to get approval for a clinical drug trial for the use of palovarotene for treatment.
There is a lot of hope in the future for patients with MHE, and every little bit helps, be it sharing this post and others like it to spread the word about MHE, or making a donation to the research foundation. Donations are tax deductible!