Wednesday, February 29, 2012

Rare Disease Day 2012


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


  1. I just admire you so much for your positive attitude and your zest for life even when in pain. You do have a lot going for you girl - you are smart, have a good sense of humor, empathetic and just in general an all around good person. You are an inspiration to many of us.

  2. I'm an MHE'r too - you know me from the Yahoo list, I think. I've followed your story since that first surgery - and you rock!

    You and your mom do such great things for kids with MHE and I admire it so much! I wish you all the best!!

    1. Hi Melanie! I definitely remember you from the Yahoo list. I hope you and your family are doing well.

  3. Hey there

    I too have MHE, and have had many surgeries for it, although by now the only complications I have from it is inflexibility - BUT! I want to tell you that in my case meditation has helped very much, for instance, I had been living with a level of tension in my body along my right hip, which made my whole right leg feel weird, like a peg leg, and I didn't even equate it as being tension because I had never experienced anything else. I just thought it sucked and that was that. It seems like you suffer from more difficulties than I did, but maybe if you engaged in relaxation and tension releasing techniques, it would be good for you.

    1. Hmmm... interesting. I'll have to look into that. Thanks for the suggestion!


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