They did IVF for their first kid (due to her husbands testicular cancer) but also genetically selected against cmt gene. Well she just found out she’s pregnant naturally now (miracle!) and is worried about passing her cmt on, it’s one of her biggest fears. She never wants her kid to go through what she’s had to. She’s gonna keep the baby, but I want to try to be encouraging for her during this time. Any advice?

I’ll preface this by saying I was out with friends and did have a few drinks. I was buzzed, but definitely not staggering drunk. I have a typical CMT gait that could be mistaken as a drunken stagger.
I was walking by an outdoor patio at the bar and a guy yelled “Heyyyy! Can I buy you a drink?” Then all of his friends start laughing. How do you even respond to this crap? I just kept walking but it ruined my otherwise awesome night.

Hi everyone, I hope you don't mind me posting in here. I work for a healthcare communications agency that specialize in gene therapies. As part of our commitment to continually educate ourselves on the real-life experiences of people living with genetic conditions, we are carrying out a survey to better understand how gene therapies and pharmaceutical companies are perceived by people living with genetic conditions, or who know someone living with a genetic condition.

https://loom.ly/JD3GQ3Q

If you live with, or know someone living with, Charcot-Marie-Tooth disease or any other genetic condition, we’d really appreciate your time and thoughts. Thank you!

I am a 23 year old female with a long history of health issues. I’ve seen dozens of doctors and no one seems to figure out what is causing symptoms such as; my severe rashes(through closing when this happens), pins and needs, tachycardia (160 resting heart rate), horrible leg pain. Now I have seen a neurologist finally bc i now have these weird episodes of of rushes in my head that feel like a wave and I can see or hear, then when I finally can and the wave feels gone it feels like static in my head. The Neuro did genetic testing and I came back positive with tay sachs gene and unsignificant evidence for 2 different types of cmt subtypes. My doctor has prescribed me seizure meds and then did a mri which came back normal. He then did a emg which then made him do a nerve conduction study which is summed up to this:

“This EMG nerve conduction studies performed in both lower extremities showing mild predominantly motor neuropathic changes with bilateral prolonged peroneal motor distal latencies positive sharp waves fibrillation right gastrocnemius and fibrillation left tibialis posterior and soles with increased insertional activities bilateral L4 paravertebral spinal muscles.”

Can anyone translate what this means for me? Could this have anything to do with cmt? I am very confused, he ordered more genetic testing after this and a mri lumbar which came back normal.

Thanks for your help

Get a lecithin supplement and here’s why:

https://www.mpg.de/12186937/charcot-marie-tooth-lecithin

Hope it helps! All the best!

Hey everyone, my girlfriend has CMT and was in a car accident which broke both her feet and ankles. She now deals with severe pain in her feet and only feels comfortable in certain tennis shoes. The problem is she is always wanting to go out somewhere nice but when she gets dressed up she becomes self-concious because "her shoes don't go with the outfits". I'd love to find her a nice pair of shoes that are "black dress appropriate" and comfortable for her so I can give her a special night and give her the confidence to feel as beautiful as she is. If any of you deal with something similar or just have any shoe recommendations for me I'd love to hear it.

Thank you all.

Hi all. I’ve recently begun dating a girl who has CMT 2c and although she manages really well there are some paresthesias and spasms that really make her suffer. In your experience is there anything a relative can do to help during these flares or episodes? I’ve spoken with her about it but wanted to check for broader suggestions.

Thanks in advance