"BERNADETTE" - LIVING W CMT - CHARCOT MARIE TOOTH

[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!

[mustard801]

I have cmt also and for all the people including the teachers at school are like "oh you can do better" and it just makes me so mad and if i could find a cure i would give every thing i have to find a cure and if i could let them have CMT for a day i bet they wouldnt be able to handle it

[funnymonkey873]

Hi there! Great story. I too have CMT, and completely agree about it being so unknown! When people hear the name "tooth" they automatically assume it has something to do with teeth!! EH! I've only ever met 1 other person in real life (and that was brief and in passing) this is the first video I've ever seen of others. Maybe I'm not looking hard enough, or maybe it's not out there?.....

[Addictedtominecraft]

Where can I buy this????I would love a copy of this for my family and myself to watch. I have CMT and I love hear stories about other people who have over come this problem -

Haters gunna hate - don't be a douche and hate this movie/people it relates to.

[tpbecker57]

CMT is genetic and it is normally passed from your parent. When someone states they developed it at a certain age, I wonder if they are speaking of onset of noticeable symptoms. My symptoms appeared as I began standing and walking...Wonderful video...

[Manyissues101]

@tpbecker57 I was confused about that too. My CMT has been obvious since birth, and even though the doctors didn't know what it was until I was much older, they knew that something was wrong. Idiots didn't take a family history apparently, but I digress.

I know that the severity varies greatly between patients and even family members, but the idea that the symptoms weren't present or diagnosed baffles me. CMT is a genetic, lifetime thing--it's with you from birth on.

[thetabbycat]

want to suffer if i dont have too

[thetabbycat]

part two: since i had her i noticed one thing having children with this disease, well birthing children, i noticed it takes a lot more out of you. i hurt so much more and its drastically has gotten worse and some days i dont know what to do.. like how will i get my kids in and out the car or too school... im scared to ask for help from the state because i dont want them to think im not capable enough to do it.. i can do it, it just cause me so much physical pain.. i love my daughter i just dont

[thetabbycat]

I hope this documentary becomes HUGE! its sucks having this disease and trying to explain it to people and they dont understand... my dad had CMT we knew it was genetic my older sister has it and i have it. also my two year old daughter does sadly too.... i hate knowing what hardships await her in life.. im pregnant again now with another girl on the way i just hope they both dont end up with it.. being 24 pregnant with a two year old with the same problems. i haven't been able to work

[teebabygrl]

thank you bernadette for trying in helping us living with this disease i know the struglee of it as iam also living with cmt and so is my son and i do go thru my ups n dwns with it a major one is suffering from drepression due to it bc i felt alone with it but now i know we have many ppl also livving with it n im not alone thnx...

[bigal0172]

I know what Bernadette is going through. I have CMT as well. It is debilitating and stressful every second of the day! It even affects my self esteem. I am learning how to cope with the disease as well as other members in my family. I understand that this documentary is still in production and I would be honored to share what I am experiencing with the world. People do need to know what CMT is and a cure is desperately needed. I'm in if anyone asks me!!! God bless all those affected!

[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.

[CMTSam]

@flortch - It's just as important to get the facts right as it is to create awareness. There is alot of bad info out there on CMT & to add to it when it is a simple error seems stupid...

[CMTSam]

@CMTSam . CONTINUED...

...to compare the prevalence for the whole world is not accurate enough as there are so many factors which distort the figures & no longer give a true story as proven in the totals in the UK & US compared to the entire world. This is most probably due to the fact that CMT affects all races equally whereas the occurence of MS affects different races differently (affecting Caucasians more). MS is also more common in women than men whereas CMT affects both genders equally.

[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.

[Hezett]

@flortch I just rechecked my numbers.

You're right. I stand corrected.

That is ridiculous!!

o.O

[tickyul]

Yeah, I have cmt1a, it is not fun watching your strength decline and pain go way up, Most GPs I have seen have no idea what CMT is, do they even know what the periphiral nervous system is?

[flortch]

visit berns life dot com for more.

[flortch]

Please visit for more.

[dealingwithcmt]

I also have CMT. I have a You Tube Channel and I am on Facebook and I have a web site. My name is Diane Gracely.

[bimmjim]

I also have CMT and have made some videos. You will have to friend me up here on youtube to see them.

[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.

[JohnnyJah]

I Love You Girl!

[TrucidOL8R]

hey berns, it's bobby

you guys have me crying at work haha

love you so much!

[cosmosgod]

beautiful music. great story. I cant wait to see more. good luck .

[MrHicard]

Yay it worked all my comments jus showed up lol well it's good they did I'm tired of typin the same thing ovr and ovr

[berns132]

@MrHicard Love you Dom..Miss ya too..thx for watching:) Muah

[MrHicard]

Bern it's Dom!! Idk if this will send my iPod is being slow but we miss u it's been so long great vid btw ur such a strong person can I help in anyway

[MrHicard]

Bern its dom We miss you great vid btw ur so strong i wanna help some how

[MrHicard]

Bern it's Dom!!! We miss u great video btw ur so strong I wanna help 

[flortch]

If you have CMT or are interested in knowing more, you can find Bernadette Scarduzio on Facebook.