I have a condition, it’s called Multiple Hereditary Exostoses. You won’t be able to tell if you’ve just met me… in fact I don’t think many of my friends know. We don’t talk about it much.
I think, I’m blessed to be relatively okay. In severe conditions, some might have stunted growth (okay, maybe I’m stunted…), major deformities, loss of movement, or obstructions to the lungs, urinary tract, GI tract, and sometimes even the brains.
Exostoses are the bumps you draw at the end of each bone, assuming you draw a bone like a normal person would –
Till today (aged 24) (crap, am I already 24?) I haven’t had a bone scan done. It scares me a little not knowing where my exostoses are, my family doesn’t find it necessary. It scares me also, because these tumors have a chance of becoming cancerous, and I have no way of tracking their growth. From “feeling” (and masseuses…), I know I have one on my left wrist and shoulder, one on my right fibula (I think), one on my left tibial (also guessing), and one on my rib which I can’t seem to feel anymore. Some feel like they have shrank.
Limitations in movement? Sitting on my butt hurts after a while, I can’t sit cross legged or kneel down, my legs feel fatigued really quickly. In rare cases where I have to put my body in weird angles, exostoses can cause sharp pains to tendons or result in locked joints… and when that happens, thankfully only once or twice in my life, I have to keep moving around in pain to try to “unlock” them. It might surprise you that I dance so much – I learn to bear with the pain, and avoid positions I know will cause problems.
The only treatments available are surgery, pain management and therapy. My brother chose to go through multiple surgeries because his exostoses were causing him pain and impaired movement. What happens is that they make an incision and saw the extra bits of your bones off. This left him with unsightly scars and permanent nerve damage. Needles scare me and I’ve never even been admitted to a hospital, so surgery’s out of the question for me. My condition’s bearable, so I don’t see a need for surgery either. Mum’s the one we inherited the condition from. Within her family, the men seem to get it worse.
Writing this because I haven’t seen much support for or awareness about MHE in Asia… if you’re someone with this condition looking for answers, feel free to reach me. You’re not alone!