I did it. I wrote Oprah and The Today Show at NBC. Might as well try :). The big message is that we cannot change CMT today, but we can change awareness and understanding about CMT. So I'll do anything I can to make that happen :) I share my letter in case you want inspiration for your own. Feel free to copy and paste- add your own information where it fits. The more, the merrier in my eyes :). We can hope!
Imagine looking completely normal, yet each day brings big health challenges. Your nerves are slowly dying due to a mis-coding in your genetics. Your muscles waste away. Your ligaments tighten. Your joints lose support so they easily slip and pinch nerves or dislocate. You are tired almost all of the time. Cleaning the kitchen may take days to recover. You lose your ability to walk, to write with your hands, to continue activities that you enjoy.
Now imagine that no one has ever heard of your disease. You are met with skepticism. You end up explaining, even to doctors, why you need accommodations and support.
Welcome to life with Charcot Marie Tooth Disorder. CMT (also know as Hereditary Neuropathy) is the most common inherited neuropathy, affecting 1 in 2500 people. Yet few people have ever heard of it. Millions of people are affected along with their families and friends. Getting mainstream exposure would mean the world to a strong community. This week is national CMT Awareness Week.
Please, please, please, help us by sharing our stories on (enter show here). Children, parents, and grandparents all live with CMT. It could change the world for all of us.
I host a weekly podcast for the Disability Community. This week I interviewed three people with CMT. A young woman in her 20s who is having reconstructive surgery on her foot on Wednesday, a father who asks the postal worker to help him fill in forms because he is losing the ability to hold a pen, and a grandmother who had a terrible time getting her diagnosis because doctors are not familiar with CMT.
The interviews are here: http://lenkaland.com/podcast24/
More about CMT at:
Hereditary Neuropathy Foundation (http://hnf-cure.org/)
Thank you for any help you can give us!
Best Wishes, Lenka diagnosed with CMT 1A at 13 years old