It's February 29th... you know what that means right? IT'S RARE DISEASE DAY! That's right, today's the day we raise awareness about our specialness. Today we all rise together, united in our crippled goodness.
In honor of Rare Disease Day I figured I'd share my story and my disability with y'all.
I was born with a genetic disorder called "Multiple Hereditary Exostoses". It causes benign bone tumors to randomly grow on the my bones. I have well over 100 tumors on most of the bones on my body. The only areas that are not effected are my skull and spine. For me, these tumors range in size from a teeny tiny pebble all the way to a baseball. MHE also causes the bones to warp and grow crooked. MHE causes constant pain, restricted movement, chronic fatigue, as well as possible mental side effects. There is no cure for MHE. The only current treatment is to have surgery when tumors become severely problematic. Thanks to my MHE I've had 10 surgeries on my legs, arms, and hip.
I got Reflex Sympathetic Dystrophy due to complications from my first surgery. RSD is a pain disorder that causes severe pain (think 20 on the pain scale), sensitivity to touch and temperature, and my leg turned a lovely shade of purple. My RSD went into remission after around a year of intense and very painful physical therapy. It reappeared nine years later, but quickly went into remission after more aggressive therapy.
My diseases have definitely had an impact on my life, both negatively and positively. I live in constant pain, I can't do a lot of normal activities, and I've missed out on experiences and milestones. BUT living with all of these challenges has turned me into a person with wisdom, strength, and perspective far beyond my years. I do my best to always remain optimistic, regardless of how bleak things may seem , because I know it could always be worse, and because things almost always get better.
So fellow cripples... rise up, be proud, and own your disability. It might suck sometimes, but at least we get a holiday!
Crippie's Tippie- Get more information about Rare Disease Day HERE
P.S- The guinea pigs are getting their baths tomorrow, and I will definitely be taking pictures :D