Monday, September 15, 2014

CMT Time to stop hiding it

September is Charcot-Marie-Tooth awareness month and it has been a part of what prompted this blog. "Time to tell the world about CMT" from the movie Bernadette.
A documentary has been made about a beautiful friend of mine Bernadette Scarduzio, it shows her life and her struggles with CMT- Charcot Marie Tooth the same disease that I have. Please view this link and feel free to pass it on. The movie is simply called Bernadette and can be found on Hulu or Amazon.

The second clip talks about it being a family secret because for generations families have just tried to deal with CMT and not talk about it to each other.
This happened in my family. My father did not know he had it until I was diagnosed because the range of symptoms can go from mild to severe at any given age. My father and I never talked about CMT. Up until 4 years ago I had not really talked to my kids about CMT. I did suggest that they get the blood test to verify whether or not they have it. Now I am talking to anyone that will listen.

It's time to tell the world about CMT. I think we don't like to acknowledge it affects us. It is denial in it's best form. It is how we push ourselves and stay on our feet as long as possible. It is time to stop hiding CMT and be open and inform people. The more people that know the more likely a cure! If you have CMT please challenge yourself to share it with someone. Most likely they are already wondering what's wrong with you. It is freeing to share it and most people are interested. Share the clips and spread the word. 

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