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Thank you for sharing what it's like for you to have CMT and be a mom as well. Your account is the first I've read. One of our sons was engaged to a young lady who more than once spoke of her hesitation of having children due to his CMT diagnosis. I said something along the lines of how she shouldn't be so afraid of life that she ends up not living it. The relationship fell apart for a number of other reasons - but I'm glad our boy did not have to deal with a situation where someone else decided if it was okay for him to be a dad.

I got the 4-J variety and at 67 years it's really digging in. Thanks for posting and hang in there.

Hi Bethany, I hope you are fine ❤ I have been in touch with you for a few months. I don't know if you remember me, though 😂. I also live in London. I recently arrived in the UK. Also, I was diagnosed with CMT a few months ago, and the very first video that I watched was your video❤. I hope to meet you someday 😅😊.

Well done Bethany. I’m happy you have such amazing support! It really helps! It is very hard to do nappy’s & snap buttons & to hold your baby. I had to be sitting to hold my babies when they were small too. I wouldn’t pass up motherhood just because I have. Cmt. There are plenty of ups and downs in motherhood but the joyful moments far outweigh the negatives. I know there are plenty of frustrating times but if we focus on these times life gets you down. Keep focussing on the joyful times.

You are amazing my dear sister ❤ I was recently diagnosed with CMT. You are our inspiration. May God bless your family 🙏

Thank you for posting your views.

<3

You are amazing mom.

Please don't feel sad Bethany, you are doing a great job already !, motherhood is not just being able to carry your baby on your own, and I'm sure you give him and WILL give him all the love, care and support he needs throughout his life. And soon he will grow up and he will be quite the athletic little guy, and you will see him doing amazing things !!! and he will be thankful about all what you did for him and how amazing you are ! And please look around you, everybody has problems, whether it is sickness, poverty or God knows what, so we learn from that to be thankful about what good we have, and to be thankful about not having the problems other people have. Cheer up !, be strong ! and don't forget to enjoy every single moment with your baby, this is the most important thing, and don't ever forget that you are an amazing person and an amazing mom !!!!!!

People say so many stupid things. Ignore them. You are such a great mama! I think you are awesome for sharing with us. We need more people with charcot marie tooth to share their life and experience. We need to be more visible. nobody understands our experience. Thank you for being so brave and sharing ❤

Sending hugs momma. You got this. May I ask what type of CMT do you have. Me and my 19 yr old son have CMT2 and my husband and 13 yr old son have a rare form of CMT1A.

You are amazing ❤ never forget that ❤️ he is blessed with most wonderful mom who has the biggest heart i know xoxo

Hi I would like to know if someone diagnosed ‘ CMT type 2’ in age 6 years . To avoid difficulties and disabling what we can do? Is CMT spreading fast . Why still no one found any medication for this. Please help .

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Congratulations! Thank you for posting this. I also have CMT and have worried that I wouldn't be able to have kids, but your video gives me hope. Congratulations and God bless you and your special baby <3

Hi Bethany. I see this post is four years old. I hope you’re doing well! I am 90% sure that I have CMT but possibly I also have the auto immune disease CIDP. I totally agree with you. That stretching is so so important. Additionally, I’ve found that movement while stretching has been incredibly beneficial. At the four minute mark where you’re holding your fingers back. I found that if I do that and then make a big circle with my arm starting at the shoulder has really helped with the tightness going all the way down my arm to my fingers. Just thought I’d pass this little tip along. Best of luck to you.❤️

Congratulations to you and your husband! As other comments have mentioned - I was worried about you. Very glad it was for a wonderful reason. Also - "I'm not sure you're ALLOWED to be pregnant?" - LOL, LOL, LOL.

Congratulations! Thank you for sharing your experience Bethany.

First, um FIRE your therapist, she's a HACK Another thing you might look into is BLOCK THERAPY Deanna Hansen created this form of FASCIA release i find it really helpful for the tense feeling i get in my hands.❤

Has anyone spoken to you about the carnivore diet as a nutrition approach to support your nervous system? I was diagnosed 10 years ago. Changed my diet because carbs were making symptoms worse. Red meat and fats are really helping me. I feel stronger than I ever have.

Congratulations! I was on the verge of trying to find a way to check up on you as we haven't seen you for a long time. I'm really happy for you !, please accept my regards and please send my regards to your husband. You guys give me hope, as my 8 years old son has CMT too. Please take good care of yourself, and try to make us more videos when you have the time.

Congratulations! Thank you for sharing your experience.

I have CMT, and had 3 babies in my late teens and 20s, after 7 surgeries to reconstruct my feet in my teens. All pregnancies were normal, and I had no deterioration after them -- in fact, no deterioration in my CMT until my 60s! The only CMT-related issues I had were fatigue, especially in the first pregnancy, and then the epidural didn't work! That was also during the first labor, and after that unplanned natural childbirth I prepared for the other two. Oh, and I did fall and put a minor crack in my pelvis, which put me back on crutches for the last 4 weeks of my pregnancy. But -- 3 beautiful sons, now grown!

well done Bethany! how inspiring! IT is so easy to make excuses that because I have CMT- say to myself 'im not going to walk that far it is too far'. it is do-able; just uncomfortable. well chosen words Bethany! There are so many people that doubt us and its frustrating! Maybe this makes me more determined to show them they are wrong.

Congratulations 🎉

What a beautiful story!

So much fun seeing everyone in these videos... especially baby! Thanks for including the study links. The summaries are interesting including things like "we found a significantly higher frequency of placenta previa". Small data samples though.

Good for you Bethany! Congratulations! What a great idea to practice with the weighted bad. Gosh, sorry to hear about the fall that must have been frightening. It sounds like you did a lot of smart things. You are beautiful indeed. I am much older than you, did not have children and I have CMT 2C. I could feel your joy, thank you for sharing your experience.

You have an awesome presence. I am so happy that you were able to experience the joy of pregnancy!

Congratulations! I've been wondering where you've been for the past year! Love your videos, they are helpful.

Congratulations I am so happy for the three of you!

Hi Bethany. This video came up as suggested for me and I have CMTA1a too. I have an almost 5 year old daughter now and shared all the same concerns that you did when pregnant. Appreciate the content! It would have been lovely to watch this back then, hopefully it will help other women who are considering pregnancy with CMT. All the best ❤️

Congratulations!! I'm so happy for you and your husband. I have enjoyed watching your channel. I was diagnosed with CMT when I was in my late 30s. I had little signs throughout my life. In my 30s it really started showing up. I really enjoy your channel. Thank you for sharing your journey. ❤ Your son is beautiful

I have cmt, in some of my dreams I have it, in other dreams I don’t. I like to think in my dreams that I’m visitng a multiverse me that doesn’t have cmt and those dreams are so exciting, but sadly it seems there’s a bunch of multiverse me’s that do have it and those dreams aren’t as much fun

Minä en voi nostella painoja ollenkaan koska saan siitä kovia kipuja käsiin ja selkään. Eikä kyse ole maitohappokivuista

Is it cmt1a you have?

thank you!!

Try not to drink caffeine, liquor. You need to be active.

Get plastic glasses and drink your water at the sink. That streamlines the operation and removes the risk of breakage. Advice from an old guy with CMT.

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I also have cmt and I live in the gym and have since I was 23 I’m 50 now and very very fit. When I was younger I was extremely strong. Now that I’ve gotten older when I went to dr yesterday I told the doctor I lift heavy and have great muscle tone u can for sure tell I workout. But yet I can’t barely carry groceries in the house now and I thought I was strong. The doctor told me it’s the cmt I can have muscle but cmt I guess is making them not strong. Blew my mind. Now my right calf muscle it will not grow no matter what. Yes exercise is the best thing ever and swimming. I seeing the older I get the worse mine gets it’s really taken its toll on me. I’m emotionally ;physically.mentally,spiritually wore out from it the last 6 months cause it’s progressed that much. But I keep going. The gym is a must for me!!! It’s a tough disease cause in most ppl u can’t see it . But when u walk u can see a limp. It’s pain 24/7. Exercise is a must with cmt. Start light and stay consistent! Swimming is even better. Get one of this waste joggers floating things find a pool and jog around the pool with it around ur waste. It’s great.

I have CMT and its taking over my life. Im scared to walk in front of people......

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!