I can't tell you how many times the following conversation has occured:
Random person: "What's wrong with your leg? Did you get hurt?"
Me: "No, I actually have a neuromuscular disease that affects my legs and feet."
Random person: "Oh, wow. What's it called?"
Me: "It's called CMT...."
Random person: (Interrupting) "Country music television?!"
Me: "No....CMT is short for Charcot-Marie-Tooth Disease."
Random person: "Huh....I've never heard of that. Does it affect your teeth, too?"
In my 29 years, I've gotten very used to most people not having any idea what my disease is. I've even gotten used to having to explain to some doctors what my disease is. I've gotten used to the stares, the weird looks, the people who avoid eye contact, and the awkward questions. Unfortunately, a lot of those things just come with having a rare disease.
Did you know that an estimated 350 million people are affected by rare disease worldwide? That's 1 in 10 Americans....30 million Americans. 30 million Americans is more than the total number of people living with cancer worldwide. There are more than 7,000 rare diseases with some affecting less than 100 people. These rare conditions are chronic, life threatening, and fatal. There are NO cures for any rare disease, and only 5% of the diseases have any type of treatment.
30 days from today (February 29th) is World Rare Disease Day. Why is the number 30 significant? 30% of children with a rare disease will die by their 5th birthday.
Help us spread awareness about rare diseases worldwide! Today is the RARE Blog Hop Day. I invite all of you reading this to visit the blogs listed below, and also visit www.GlobalGenes.org and www.RareProject.org/blog to learn more and find out how to participate!