"BERNADETTE" - LIVING W CMT - CHARCOT MARIE TOOTH

An upcoming documentary about living with CMT. Bernadette was "born with the biggest disease no one has ever heard of." From Run Amuck Productions, LLC.

**This film is currently still in production.**

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[CMTSam]

I second Hezetts figures. If you look almost ANYWHERE other than the HNF then the figures are all in the region of those Hezett stated. x

And with the amount of incorrect information about CMT that is already out there on the web, we need to try and pull together and get the correct info out there.

[flortch]

@CMTSam Actually, that's not true. The numbers are also according to the Charcot Marie Tooth Association.

[CMTSam]

@flortch HNF states CMT Prevalence in the US as being 125,000. The National MS Society states the MS Prevalence in the US as being 400,000.

If you are in the UK, then CMT United Kingdom is 23,000 and the UKs MS Society is 100,000, as is the UKs MS Trust..

The figures only get closer together when you compare figures for worldwide prevalence. no idea why there :S

[flortch]

@CMTSam Worldwide stats is what is being referred to here. The point is that the disease is huge and yet so unknown.

[Hezett]

This is beautiful.

However.....

The prevalence of MS is about 1 in 800......

The prevalence of CMT is about 1 in 2500....

[flortch]

According to Hereditary Neuropathy Foundation, CMT affects 2.6 million worldwide. According to the National MS Society, MS affects 2.1 million worldwide. May I know where you are getting your numbers? I ask sincerely.

[berns132]

Thank you All for watching!!! Im trying to raise Money for this film to be released!!! Please donate and pass on...Im "Bernadette" find me on facebook if you have CMT. Let's give this disease AWARNESS...Love you all ...(this is for YOU..Dad:) R.I.P.

[Brayden10082011]

Bernadette I admire your courage. I am 50 and have had cmt my whole life. I think I am hiding it from everyone until someone tries to "politely" ask me out of curiosity why am I limping. My cover is blown and I feel like the shamed little girl on the playground all over again. Thankfully it is a different world we live in today. I wish you well and will keep tabs on your work. Thank you for everything you have already done.

Lisamarie

[MsChel709]

I began to have symtoms of CMT after I was an adult and in the military. Doctors did not officially diagnosis the condition until after I retired from service. I'm told that this condition is hereditary, yet I haven't been able to find any history of it in the family. I have a daughter and three grands, I pray that this disease stops at me.

[MomwithCMT]

I have 2 videos on my channel about CMT and my story with CMT Please watch.

[Lineman1249]

Your strength and dedication is a beautiful inspiration to the human soul. I'm thankful to know about the biggest disease that no one ever heard of. I'm even prouder to have met the driving force behind CMT enlightenment. In a time of year so focused on gifts to unwrap, I find the most satisfaction in my gift to groups like the Hereditary Neuropathy Foundation in the fight against CMT. I challenge everyone to find the same satisfaction...I Dare You!

[enemywithpride]

Could you tell me a little more about "affecting the breathing"? coz thats what happened to me after i gave birth both times, and ive never been given any information.

[saintfletcher]

Thank you for this video. A family together helps. My whole family has CMT, male and female and usually hits as as we pass 30. That is not the typical patter. I've never discussed this on my YouTube channel in Australia, maybe I should. It is scary watching my whole family struggling with their legs. I'm the youngest and the cramps are not severe, but I do take lots of magnesium. So far so good.

[XGodLikePowersX]

you got me crying 

[Drummerjazz7]

Awesome and good luck with getting this film released :) It will be awesome! I have CMT and my gift is drumming...lol It sucks that I have a talent that God gave me but a body that is against it. :P But I thank God I do not have it worse than a lot of other people out there. The only thing I am scared of is my neuropathy :/ since drumming is/can be hard on the hands and feet. Anyway, hope to see this film soon :)

[justlikeheroes]

I met Bernadette this past weekend and was amazed by her spirit. It was an honor, and I look forward to supporting this cause.

[namredorf]

family has CMT, my grandfather had it and then my father and 4 of his siblings have it and my brother and i have it, they say it doesnt skip a generation and 5o% of your children will have it which is pretty mcuh right on the money on our family, there are 4 kids in my family and my brother and I are the 2, I have 3 children and only 1 of them has it, it is so hard because just looking at me i look pretty normal but people dont understand how easy i get tired. see me on fb sherrie froderma!