All, Chronic Illness, Disability, My Favorites, Personal Experiences, Transverse Myelitis

Rare Disease Day

I first wrote a similar post for Rare Disease Day two years ago, but this year, I took that one and made some changes!

Today, February 28th, is worldwide Rare Disease Day. I am hoping to raise awareness for not only my own disorders, but for all rare diseases as a whole!

In your life, you may have met someone with a rare disease. You’ve probably seen it at some point. And you’ve definitely heard of it. Maybe you heard it on the news, or read about it, or heard about your aunt’s best friend’s cousin’s uncle’s friend’s son who has one. Whatever the case may be, I can guarantee you’ve come across a rare disease at some point in your life.

When you hear about this kid with an impossible-to-pronounce illness on the news, you may feel bad. You may feel bad for a second, but you don’t give it that much thought. When you hear about a rare disease, it seems far away. It’s rare and it affects OTHER people. It affects people across the country, people you don’t really know. None of these rare diseases can affect YOUR life, right?

 

 

But, unfortunately, it can.

 

You see, I, like so many other people in this world, was once in the same boat. I remember hearing about these things happening to people, but it never connected. It wasn’t something I ever had to worry about.

But your life can change in a second. I was paralyzed within less than twelve hours, affected neck-down. I woke up on August 16th, 2011 with a small pain in my neck but didn’t think much of it. By that evening, I couldn’t walk, sit up, or move my arms. I was in pain. And there was no cure at all; the only treaments I’ve had in an attempt to lessen the lasting damage have been IV prednisone, plasmapheresis, and physical therapy, plus daily medications to control chronic symptoms.

 

I’d been able-bodied for the first thirteen years of my life but suddenly, at thirteen years old, my life was changed forever. I now had to deal with paralysis, weakness, chronic neuropathic pain, chronic fatigue, spasticity… Everything was turned upside-down in just a few hours.

I had never heard of Transverse Myelitis before then. No one I knew had, either. We had never heard of it because it’s so rare; even most doctors rarely seem to know what it is or much about it.

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Sarah Todd and I with our books, which we wrote to raise awareness

 

I don’t share this for pity. I don’t want that at all! And I think I speak for most of us with rare diseases when I say that. All we really want is understanding. Awareness. We’re not just people across the country or the world. We’re not just people you hear about on TV. We’re very, very real. Our lives are real. Our struggles are real. We shouldn’t be people you feel bad for temporarily, but then forget about two seconds later. We deserve more appreciation, more awareness, more attention than we get. Rare diseases aren’t something you can just turn your back on. They’re not something you can just brush off. You may not think they could impact your life, but trust me. They very well could.

Transverse Myelitis itself only affects approximately 1 in 1,400 people in the US a year, but approximately 1 in 10 Americans has a rare disease, and for many of us, there aren’t many (if any) viable treatment options.

 

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Transverse Myelitis Walk; most of us here have a rare neuroimmune disorder

 

Please help us raise awareness for rare diseases such as Transverse Myelitis (and for similar disorders such as Acute Flaccid Myelitis, which is what Sarah Todd has!) today, for Rare Disease Day 2018!

You can visit rarediseaseday.us to learn more about rare diseases in general, and myelitis.org to learn more about Transverse Myelitis (and other rare neuroimmune disorders such as AFM, NMO, ADEM, etc.)

(Also check out The Transverse Myelitis Association and Rare Disease Day Facebook pages!)

 

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