Rare Disease Day 2014


Today is Rare Disease Day

What is a rare disease?

  • 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.

(Statistics from RareDiseaseDay.org)

While Lyme disease is NOT considered a rare disease, on my journey back to health, I’ve met not only other “Lymies” but those who struggle with many different chronic illnesses, including rare diseases. How many of you have heard of Neuromyelitis Optica (also known as Devic’s disease) or Cyclic Vomiting Syndrome (CVS)? I had never heard of these before I met individuals with them. Hearing their stories gives me hope and strength to push forward as I admire how they can do the same despite the odds.

I personally do suffer from a rare disease called Idiopathic Hypersomnia (IH) (or Primary Hypersomnia), which is believed to be caused by living with Lyme disease and other tick-borne diseases for many years without being diagnosed or properly treated. Of course this is very controversial and not known for sure. I also suffer from other sleep disorders like narcolepsy; narcolepsy is not considered a rare disease but affects about 200,000 Americans, which is close enough to be a rare disease. Whether or not these sleep disorders were caused due to being treated with tick-borne diseases years after initially being infected or for some unknown reason, it is extremely frustrated when so little are known about them. There is more information out there on narcolepsy than Idiopathic Hypersomnia but we don’t know what causes them.

So today, in honor of Rare Disease Day, take the time and learn about a rare disease.

Learn more about the cause too and visit rarediseaseday.org

Sharing what it is like to live with Lyme disease & other chronic illnesses to spread awareness; health advocate;

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