Monday, January 30, 2012

Rare Disease Blog Hop

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 and to learn more and find out how to participate!


Lenka said...

What a fun event. I still think that CMT is not as rare as people think- it's just unheard of for some reason. More people have CMT than MS (I've heard). We need a new name :)

Casee said...

Awesome. I am so glad that you are reaching out to others and I am learning so much from reading your blog. Here's hoping these rare diseases will all have a cure very soon!

Mary at LaL Solace said...

Thank you for sharing your story in honor of Rare Disease Day. My son Gage passed away from a rare genetic disease called early-onset LAL deficiency (also known as Wolman disease) in 2009.As you know from our own story, it is so important to be an advocate and speak up for ourselves and our loved ones. My hope is that someday other families will not have to go through what we did, which is why I founded LALSolace -- a support group for people and families affected by LAL deficiency. I wish your family well! Mary

Questioning Fate said...

I have just been diagnosed with CMT, but I remember having to go through that sort of comments when my mom was diagnosed... I'm now having to deal with it personally and it is tiring and depressing...

Lenka said...

Thank you, everyone!!

Questioning Fate- I am sorry to hear about your CMT diagnosis. I hope you can find tricks to make life easier for you. It does get tiring, and depressing.

I try to remember that I sit and watch more sunset instead of walking away. I appreciate good health (my version of good health :)). And I have the chance to change the world- share stories and educate so the next generations have an easier time.

I hope the future treats you kindly!

Lenka said...

And Mary, I am so so sorry for your loss. I can only imagine...