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What type of CMT do you have?

Hi! Thanks so much for sharing all your experience with your surgery. I also have Cmt A1 and I just had surgery a month ago and I have done similar things as you did, so far I still in recovery and I haven’t started physical therapy but I want to ask you something did you have your foot and ankle numb after your surgery and if you did for how long you have it because I still have my foot and ankle numb and my doctor says it will eventually come back to normal feeling but I will like to know from some one with experience like you and I also will like to know if you have use ankle strengthening or stabilizer to help straightening your ankle because even after my surgery my ankle still looking a little twisted, please 🙏🏼 let me know when you can. Thanks and God bless you with good health and help you to go through all this pain.

Im just worried about it ...dont know what to do

I came to known 2 years ago that i have this disease and i dont know what to do about it ... there's no cure ...im really depressed

Cmt effected my heart from childhood which in turn effected my breathing or rather more, my ability to get the benefits from each breath. my chest is large and lungs are healthy. My cmt only kicked in at age 34, so any deformity is minimal but I fight pain as my muscles pull on the bone , though I have always had foot drop from childhood. Im 8 plus heartattacks down, my brain and heart have stopped communicating on 36+ occasions which now is having an effect on my mental health. Help in the UK is nonexistant, they dont have the answers so you play the referal game. my advice to anyone is hitt the B vitamin trail and maintain an exrcise routene to keep the blood flow, good luck

Fantastic advice, I'd add in to deep breathing with this stretch too, deep breaths in and slowly out, can really encourage the blood flow to the muscles/tendons and help relax the body into the stretch thus making it more effective. Thanks.

Thanks

Thank you for posting this. As someone that has CMT in my mid 40’s I have been able to build muscle by exercising it has increased my mobility. Never give up and keep exercising!

ITS GENETIC .DO NOT HAVE KIDS

My CMT symptoms and diagnosis (along with Pericarditis) all came about after getting this fucking vaccine. STAND IN SOLIDARITY TO CALL FOR A GLOBAL COMMISSION REGARDING THE SIDE EFFECTS OF THE VACCINE AND HOW THE WORLD GOVERNMENTS LIED TO US

Thanks for sharing your journey ❤ How can I reach you? I recently got diagnosed and my family is worried about me. :-)

I am 21 me too have CMT now I got the answers for all my weirdness

Wonderful video! Great job! 60 years old with CMT. I started lifting 10 years ago. Last year I won my division for Bench Press at IPL world championship. Still yes it is hard to get a glass of water. My advice. Bethany join a gym. A gym with really strong people and lots of equipment. Get a trainer to program you with normal exercises. Wear the braces and work on deadlifts even if it is just 5 lb barbells. We have a nerve disease. Not a muscle. Go Bethany!

Funny how a lot of us eventually realize this stretch feels good and start doing it. I also do it while making coffee, brushing my teeth etc.😂

Did this work for you?

Buy bottled water, keep it near your couch.

My daughter was diagnosed with this when she was 6. She's almost 26 now. It's absolutely heartbreaking. I would give anything to take her place and relieve her of this burden.

More power to you❤

I would feel bad if my kid had something i had. Shame on dads boner

As someone recently diagnosed, I’ve been wondering how other people with CMT stand up after a fall or from sitting on the ground. I can’t.

I had this happen back on 4/21/2019, absolutely one of the most brutal things anyone can go through I wouldn’t wish that on anyone I can remember feeling like I was gonna pass out when I was just laying on the floor

Thank you for being such a great support for all patients.

I am planning to have the same surgery as you soon. My doctor wants to fuse my ankle, though.

Thank you for sharing. My grandmother had CMT, and today I got back from the neurologist half-way confirming that I have it too. Waiting for the genetic test to come back for me now. It's really helpful to hear what other people experience and how they deal with it, so thanks again for sharing.

My name is alaaldeen ahmad i got cmt my hands and my 2 foot i just say thanks god for everything yes i do go through pain

You inspire me! I have cmt 1b and diagnosed April 2019 at age 47. Since my diagnosis several more were tested and we now know my son, mom, maternal gma, maternal aunts & uncles have 1b too. I want to ask you do you have hand pain at night? I wake in night only with awful aching pain.

Do drugs it helps alot.

I'm 14 and want good fingers so thanks

How old are you? You are so beautiful and strong!! 😍

Thank you for sharing this info. We need to share because we learn from each other. I have never been helped by doctors so it is reassuring to hear others with this disease. I have CMT 1B MPZ (Myelin Protein Zero). Keep it up and thanks again!!!

What a lovely gift she gave you! And thank you for sharing such a neat story!

Does anyone have any tips for cold, sweaty, feet and hands? I think its due to my bad circulation to those areas from cmt. Not sure but its almost unbearable. I can usually warm them up for a bit, bit they never stop sweating. 😢

My CMT is not so severe like yours. My sister and I got it from our Dad. He feels guilty, but we never thought about it that way. Your Dad must be an amzing person. Mine is too. RIP Dad.

Thanks to you all for sharing your CMT journey's. From what I am reading, Dr. Pfeffer seems to be the one with the most experience. Can anyone comment on successful surgeries with Dr. Pfeffer, including how long ago their surgery was and how it is holding up?

I have a hereditary form of Muscular dystrophy in my family (fshd). it is dominant. thankfully it is a mild form though. my grandpa was able to have children and live a pretty normal life...walked into into his 60s and 70s with supportive equipment and got bad mostly quite old (lived till 85). his children carry it and are strangely mostly unaffected. Regardless of the gene we have were all pretty lucky considering. my mom recently tested positive and is asymptomatic at 60. anyway, his disability wasn't his whole life. he was a pianist and did alot of cool things in his life.

Thank you. I’ll do this on my 3 yr old with cmt. God bless you and Ty for sharing what the OT said to you. I felt like they were purposely not listening to my worries

My 3 yr old is newly diagnosed with cmt mutation nefl. Do you have to wait for surgery until they are a certain age or done growing?

Wow thank you for the awareness. My 3 year old is newly diagnosed with NEFL mutation. I’m still learning what this future will look like for her. You are beautiful and doing it. Every step of strength is in you. God bless you

Bottom line : knowing this is passed on,will you have children?

Have plastic glass ? And or water bottles near you

Opening shot I saw 'the hand', you know what I mean. Braces & canes: I've had enough and I do ok without but 'the general public' needs them more than I do because I can pass for normal when fully clothed and standing still. I've been wrongly accused of intoxication many times based on my walk or need to use my eyesight for balance. For as long as my CMT4 remained undiagnosed, it was repeatedly mistaken for intoxication.

You have a great outlook on life You can also look at it on one hand feel guilt but if he didn't have kids you wouldn't be here and maybe he like some others didn't even know he had it but I also believe it's up to the individual I myself have CMT and would never have kids But that's my choice

In all my dreams I can't run or walk properly, now I understand why after getting diagnosed with CMT 😅

Hello. Im sorry for your experience. I never went to the doctor when i was a kid and i had mobility issues. I still can walk but my walking up the stairs and became difficult. Im now 29. Learning that i might have cmt disease. I have all the symptoms. I did tests my doctor only told me the enlargement something something is Associated with cmt disease. I wish I'll seen a doctor sooner my toes are crueled up i cant lift my left foot i can barely lift the right This is very frustrating. On top of that my doctor didn't want to tell me anything or do anything. So, i feel your pain. Thank you for making videos for people. Im lost and my doctor didn't tell me anything. My hands not affected yet i was wondering if i could buy finger braces to keep them straight as well

Hey thanks so much for sharing this video, I have a family history of CMT. I am 29 and I dont have any syptoms. When did the symptoms start for you? and what should I watch out for?

Do you have any issues with reccurent hiccups? My pherenic nerve gets irritated at the smallest cough 🥺

I have cmt n i have restricted lung disease too ive had colds damn near kill me bc they turn into horrible pneumonia n bronchitis. I have terrible rare cmt did symptoms tht im so over hearing extremely rare symptoms tht are rare to me! I get winded eating!

Nice to see with uour dad

❤video with you and your dad is really nice

❤Very nicely put by your dad and very nicely absorbed by you....its really encoruaging and yes i want to focus on the goodness and be grateful