The Thing About Rare Disease…


For most of us, we never think about a thing until it becomes a thing. You don’t think about homelessness until you’ve faced foreclosure or you never think about what’s really important in your life until you have a near-death experience.

Welp, I’m no different. I never thought about rare disease until it affected me personally. I’m not going to talk about the plethora of doctors’ visits, stupid questions from said doctors, dead ends, and sheer exhaustion I endured all while trying to find out what was wrong with me. When I finally stumbled upon the answer years later, I found that there was no cure for my condition and it was considered a rare disease.

Definition: A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000.

A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.

  • 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
  • 50% of rare diseases touch children.

I can only manage the symptoms – most of the time. After my initial elation due to discovering what was ailing me, the real work began. In the end, it’s just like dealing with any other long-term illness, you have ups and downs and good days and bad. On the other hand, it has made me an advocate for Rare Disease. While more well-known diseases like diabetes and cancers get money thrown at them all the time, rare disease funding is slow. I’m guessing it’s because of the number of people affected are low in comparison to other diseases. But you know, just because fewer people are affected doesn’t mean the disease isn’t just as debilitating or even crippling to its victims.

To learn more about rare diseases, Rare Disease Day, or even how you can help, please visit Rare Disease Day USA at http://rarediseaseday.us/.


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