Toward a Cure for Charcot-Marie-Tooth Disease
ฝัง
- เผยแพร่เมื่อ 9 ก.ย. 2024
- Professor Xiang-Lei Yang studies proteins called tRNA synthetases at The Scripps Research Institute (TSRI). Her research has brought her closer to understanding a neurological disease called Charcot-Marie Tooth. Learn more at scripps.edu
Thank you to the Charcot-Marie-Tooth Association for providing images.
![Charcot Marie Tooth Disease - Symptoms & NEW Treatments! [2024]](http://i.ytimg.com/vi/HOebXZIZT4Y/mqdefault.jpg)
![Charcot Marie Tooth Disease - Symptoms & NEW Treatments! [2024]](/img/tr.png)
![[UNCUT] The Loyal Pin ปิ่นภักดิ์ EP.6 (2/4)](http://i.ytimg.com/vi/GgeGQOP10RQ/mqdefault.jpg)
![Charcot Marie Tooth Disease [Best Foot Treatment!]](/img/n.gif)
THANK YOU FOR ACKNOWLEDGING OUR EXISTENCE!!!!!!!
it would be a miracle if they found a cure that reversed the mutation... :/ im so depressed and i have no confidence
According to the 60-Minutes documentary a year ago the NIH-Clinic in Maryland? can repair genes and re-inject the good genes back into patient's body together with weakened HIV virus so body's immune-system doesn't refuse the new gene, and patient got cured within just 24 hours, but it'll take them decades to test on every decease.
Me too :(
@@Hesam0000 Hey bro, i have a friend with this disease. Can u please send me the link of this documentary to i send it to he, please?
@@SemaYT ...charcot-marie-toothnews.com/2021/04/30/high-dose-pxt3003-shows-sustained-safety-benefits-patients-with-cmt1a/
@@SemaYTyou are a good friend amigo
I would love them to find a cure from my cmt it is so had to deal with the pain everyday, I hope one day there will be a cure for it
Do u take any medication
Yea same it sucks but we gotta deal with it
I really hope you finish your work with the best result, soon, because It is so hard to live with CMT. 😔
I have CMT myself, and I am really grateful that people are trying to help us. I hope you succeed in achieving your goal, because it's a really nasty thing to live with.
My girlfriend has CMT I will always love her
That’s not a flex 🙂
Both my feet broken bones, getting deformed im 62,left hanf shakes and weak, fasting, keto, diets, help me a bit, I hope thos girl solves the puzzle, im not afraid to die, but I fear beginng a burden on my wife, i love her way too much to make her do more to carry me too long , i pray this girl solves this mystery that attacked me almost over night on my birthday Aug 1 2019.
My CMT foot pain really kicks in when I lay down to go to sleep. I have found that 600mg of gabapentin a few hours before bedtime helps me tremendously!
Where can I get information on how to donate money for research to this Charcot Marie Tooth Disease, I want to do a fundraiser for my 50th birthday. I have family members with this disease.
I have been to 4 neurologists, 3 neurosurgeons and my pain management doctor. No one has a clue what I had. I have been “doctoring” at the Andrews Clinic ( best orthopedic hospital in the country). And the Mayo Clinic!! No one could figure out what I had. Except for my good friends wife! A kindergarten teacher!! She spent a good amount of time researching possibilities of what I had. Bingo! My left foot in now so deformed. Toes curl under my feet. Left foot is a 7 1/2. Right is 10 1/2. My left calf muscle is tiny compared to my right. I could see fascticulations in my leg all day long. They have now stoped because my calf is dead. Right foot is starting in curl and it’s running down my arms. I have spinal stenosis, degenerative disc disease. I’m wondering if the CMT caused many of my spinal issues.
2 Corinthians 12:10
I understand that cmt and myoclonic seizures have an association and they are super painful and need assistance when I do things like cooking and cleaning.
7 years since this video.. anyone knows if there was any progress with any treatment?
Some rumors about siRNA for type-1 A and I have it but clinically there is nothing.
I just had a conversation with my parents they just don’t understand there is no actual cure so far, everytime we talk about it they start naming some sever cases related to neurons and dad add his legendary statement (if you believe there’s no cure for flu you’ll never heal from flu) and I get so helpless trying to explain it to them and burst out crying :)
Idk why I’m ranting here but I’ve no one to talk to about it like the rest of us
4 years later ---- nothing ----- it is so wrong to get peoples hopes up and leave them in suspense.
I've spilled many things and fall all the time and the slightest knock in the hip or arm by the door handle when I lose feeling in my arm like in coordination and even tho it wasn't hard the pain sears up my arm and in my neck and back- I go extra careful as I have over and under sensitive nervous system.
Living and understanding the cmt I have has helped me live a bit more comfortably
I have CMT 1A I need some hope for treathment, please. Iam so young I need live, move, run. Is any treathment, medicine, is it on a good way in few years, please?
Research Pharnext pxt3003 and ACE-083. Looks promising. But who knows.
According to the 60-Minutes documentary a year ago the NIH-Clinic in Maryland? can repair genes and re-inject the good genes back into patient's body together with weakened HIV virus so body's immune-system doesn't refuse the new gene, and patient got cured within just 24 hours, but it'll take them decades to test on every decease.
You coming our India Kerala state .there better treatment in ayurvedic .cure this diseases in ayurvedic treatment brother
@@AshokKumar-jn2el can u please send us details? my friend really needed it.
@@abirkhan679 you coming our ayurveda medical collage Kochi,thiruvanthupuram.very good treatment in kottakkal ayurveda malappuram better treatment friend ok
I have CMT and in south korea
HURRY PLEASE.
yes agree ! I hate this disease
I’m with you guys
yes it do suck
Actually there is a cure. As witnessed on 60-minutes program now NIH Clinic of Maryland can repair the faulty genes and re-inject them back into patient's body and as their patient said "She noticed the difference in just 24 hours". If our genes are repaired, at the minimum, the decease progress will stop and I'm sure the nerves will regenerate and activate with the help of stem-cells.
UPDATE: PXT3003 drug by Pharnext of France reverses the effects of CMT. It is yet to get approved by FDA spending phase-3 of tests on volunteers.
How’s it coming along now?
Heridity motor sensor neropathy type 1 disease. Did any treatment or medicine has came. I'm have lots pain. And so depressed.
soundarya Tamse Same here
According to the 60-Minutes documentary a year ago the NIH-Clinic in Maryland? can repair genes and re-inject the good genes back into patient's body together with weakened HIV virus so body's immune-system doesn't refuse the new gene, and patient got cured within just 24 hours, but it'll take them decades to test on every decease.
Coming Kerala ayurveda medical collage better treatment
@@AshokKumar-jn2el pls give me phone number of thier hospital
Brilliant ?? CMT type 1a if your nerves are dying how can u save them
No breads
Sugars
Potatoes
Grains
Dairy
@@averyt6521potatoes???
I’m a CranioSacral therapist in NY.
I started working with an amazing 4 year old boy with CMT. I saw positive responses. I’m looking for more info…
Any updates? This video is old. Please!
According to the 60-Minutes documentary a year ago the NIH-Clinic in Maryland? can repair genes and re-inject the good genes back into patient's body together with weakened HIV virus so body's immune-system doesn't refuse the new gene, and patient got cured within just 24 hours, but it'll take them decades to test on every decease.
I actually have CMT that why i looked this up besause i thought there was a cure....
I send successfull affirmation energy your way.
I hope you find the map to cure it and to have the dna back to normal.
As I have cmt that causes me myoclonic seizures and sometimes it takes me a while to do things when they start. I also had physio therapy for shortening of the tendons in my feet- I was very painful but I'm Happy the dr did a good job.
I wear brace to help with drop foot and to stop my ankles from rolling as I have loose joints and its near impossible for me to gain any more weight or muscle then I have now no matter what.
But I won't stop staying healthy and trying my best.
You need more people to study on?
The cause can be found and a cure can be found. Stem cells is 1 idea. It seems like nuerology is just honestly useless, because people want causes of these symptoms to be found and a cure.
You said it all, we do not understand CMT
Balance, loss function of hands,
So few comments here, nobody gives a sh*** of this decease
Please hurry 😔 I need someone to be better...
What is the current treatment for type 2A thank you
According to the 60-Minutes documentary a year ago the NIH-Clinic in Maryland? can repair genes and re-inject the good genes back into patient's body together with weakened HIV virus so body's immune-system doesn't refuse the new gene, and patient got cured within just 24 hours, but it'll take them decades to test on every decease.
Cmt 1c veya 2c çalışmalar varmi?
burda ne anlatmış İngilizcem yok
Still nothing 🗿
Please hurry I have cmt please hurry
This is a waste of resources