Living Life with a Rare Disease

As many of you know (and many of you don’t), I live with a rare genetic disorder that causes my body to actively grow a second skeleton – fun right? I’m literally a human statute & it’s basically the coolest hobby ever.

At age five I was diagnosed with FOP or Fibrodysplasia Ossificans Progressiva, if you want to get fancy. It’s a genetic condition that affects 1 in 2 million people where muscle, ligaments & tissue turn to bone.

I’ll be the first to tell you, I got lucky. I might have got a genetic condition created by the devil, but I got to live a normal childhood; one filled with love, laugher, adventure, and a lot  of bumps & bruises. But my body dropped a bomb on me one September day. I went to the doctor for the second day in a row (every kids dream right?), but that doctor saved me and my family from a lot of pain. I saw the only  doctor in the area that has seen, heard, or even knew about the disease that was about to take over my body. He quickly took my socks off & left the room-even at five, I knew he knew something that would forever change my life. He saved me from.gabing a survey which would have caused more pain, hardship, and many hours in countless doctors offices. He diagnosed me & saved me all the testing that would further harm my body.

I got lucky, because I am surrounded by people that love and support me with everything they have. I’m lucky because even though I have this awful disease, I have the coolest little big toes — a marker for FOP.

The worst part of the disease has nothing to do with the awful pain or the bone incasing my body. The worst part is the stares I get going about my daily life. The general public is so discouraging about anything or anyone that looks different. I don’t mind answering questions and educating the people that are genuinely curious, but the people that automatically assume that I don’t belong or that I’m not enough? That’s what makes this life hard. The looks alone are enough to make you feel like a third class citizen, so let’s not start with the comments they throw my way.

Outside of the disease, I’m still a twenty-something that’s all about fitting in. I love all things girly. But my disease took one very important thing from me; the ability to do my own hair. This might not seem like a big deal to some, but to me, I’ll tell you it’s the biggest thing the disease took from me (just ask my mom). If I had the choice, it would be the first thing I took back from this awful disease, which says a lot considering my jaw & hip are both locked as well. I would much rather gain the movement of my shoulders back, over the ability to walk or eat normally.

This disease took a lot from me, but one thing it can, and will never, take from me, is my attitude. Each day is faced with many (many) challenges, but with my support system, anything is possible. I love my family & friends that make every single day possible. Although, without my doctors & the copious amounts of medicine, I can honestly say I would have a much different outlook on life.

I’m beyond thankful for the outpouring love & support from all my family, friends, & doctors, because without them, my life just wouldn’t be as good.

I recently found a quote that I’m making my new motto to live by:

“You aren’t a burden, you have a burden, which by definition is too heavy to carry on your own”

One thought on “Living Life with a Rare Disease

  1. Robbie Engel says:

    Carli, your eloquent words are so insightful and inspiring. Your sense of humor, loving spirit, and love of life are amazing. You are amazing!

    Like

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