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.
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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!
Hi Steph, reading your story I know your pain very well , I'm in Australia and well never known or spoken to anyone with HME im 27 now so the support here is non existent as well by the sounds of things, and yeah I have got so many exostoses ( you probably wouldn't notice straight away ) any way I gave up counting a fair while ago and had many many surgery's ( I hate needles too) , the strange part is we have no family members with the condition so I must have one the lottery. Anyway its all good if im still kickn with the amount i have you have nothing to worry about. Take it easy - Kyle
ReplyDeleteHi Kyle! It's cool to read about someone else wiht HME! So strange that you have no family members with the condition... how many surgeries did you go through? did your exostoses really impair your movement? great that you're doing well now :) you have a good one too. if you ever need support i'm here!!
ReplyDeleteHi Steph , Yeah mum went through the family tree found nothing , she has this theory that it had some thing to do with the fluoride in the water where we lived in Melbourne at the time i doubt it. I have had 8 surgery's some larger than others , I have had several on my ankles with screws in each so I could walk properly, bone taken from the back of my leg so I could kneel in some form and to remove some of the pain, one finger with pin placements to keep straight which didnt work out anyway. And others tried I to get bang for my buck I guess and often got a few done at once. I really should have had more, but left it alone for a while . As for impaired movement yeah I cant run , I like it but can only do in short bursts before the pain kicks into gear. So it limits the sport you can do blah , from what I have read it really varies some people only get a few and others get allot , when did you first notice it ? , What type of dancing do you do?
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