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. https://www.youtube.com/watch?v=TCRbIaOGTAw

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. 

Comments

Post a Comment

Please leave me any comments I appreciate you reading my page!

Popular posts from this blog

Chronic Illness and faith

The precise meaning of chronic is "persisting for a long time", and it is used chiefly of illnesses or other problems. If you are chronically ill chances are you are operating at max capacity every day. I know I am and have been for the last 26 years. I feel like the child’s game where you try to fill the bucket with out it spilling over and when it does the game is done. I feel like if I get one more thing medically to deal with – game over. Today I had to yell at a nurse over the phone, to get the help I needed. This should never happen! One of the reasons I went in to nursing was to make a difference, to actually care about and help people. Patch Adams one of my all time favorite movies touches on this and is an example of what I am talking about. When I worked at a hospital a patient with nausea and vomiting requested lime Jell-O and his nurse did not order it so I asked why and she said he would just vomit it back up. Since there was no medical reason he coul...
Read more

Done being strong

I have had too much going on physically. I am overwhelmed and I have been trying to be strong not just for me but for everyone else. Today during a therapy session I touched back to my childhood and revealed where it all started------- In a hospital getting poked and prodded. Having my privacy invaded and ignored. It started when I was being told " be a big girl, don't cry, be strong". It was my mothers voice.  My experience started in 1964 and that seems like a million years ago if you look at today's medical environments. There were visiting hours and lots of rules. There were wards rather than rooms and a very cold sterile environment. Procedures were not explained to me I was told what to do but not what to expect. When I was eight I had both an upper and lower GI. The x-ray attendant was unkind and impatient which resulted in quite a mess. It just gets worse but now the picture is painted. I think we all look for something we have control over in experiences...
Read more

Fighting the fight!

Image
Last week was one of the best we have had since we came here. My energy level was high we did a  lot of fun things including seeing turtles surfing in the waves! It will be one of my favorites ever but this week has brought pain and weakness and financial worries. When I was able to work as a nurse I made really good money and it is so frustrating to me that I can no longer contribute financially. I feel guilty, frustrated and overwhelmed as always.   I know all my husband really wants is for me to be happy and enjoy as much of life as I can. So why do I fall back in to being angry. The enemy has a stronghold here in my life and I earnestly praying against it. I need to stay positive and keep counting my blessings. I need to have faith in God to improve our finances. I need to take a day off and physically rest when I need to. The enemy has stolen enough from me in my life I am making it my Job to see he doesn't get any more! If you can think of any scripture or quotes...
Read more