Welcome! You're not alone.

Getting Started:

1. Become a Member
2. Make Friends
3. Post to a Forum
4. Read or write a Blog
5. Join or Create a Group

Check our FAQ PAGE and First-Time-User Guide.


Since site content and usernames are google searchable, please protect your anonymity by creating a unique username.

To change your username, click here. 


All of the material provided on this site is for informational purposes only and is not a substitute for professional medical advice or treatment.

Always seek the advice of your physician or qualified health provider with any questions regarding your health.

Do not disregard professional medical advice or delay seeking it because of something you read on this site.

Our Guidelines

Let's Keep it Nice & Clean
  1. Describe (share experiences), not Prescribe (suggest treatment for others).
  2. No spam.
  3. No personal attacks or defamatory posts.
  4. No offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos).
  5. No specific doctor or hospital name mentioned in a negative context, for legal reasons. Specific doctor or hospital names in a positive context are welcome.
  6. No sharing of members' posts to other sites without their express permission.
  7. No solicitations or promotions of goods or services for sale. No fundraising without the permission of the moderators.
  8. No email addresses or phone numbers on the forum, for your security.
  9. Religious content must be restricted to the prayer group.
  10. No politics please, please.

Thanks for your cooperation.

Community Moderators

Have a question, concern, or suggestion? Or would you like to volunteer?

Please send a private message to a moderator.





What is Charcot-Marie-Tooth?

Charcot-Marie-Tooth (CMT) is a rare, inherited, neurological disorder which affects the nerves, resulting in progressive loss of muscle and touch sensation affecting the feet, legs, hands and arms. CMT disease affects approximately 1 in 2,500 people.



Started by jp in General. Last reply by jp on Friday. 6 Replies

Hi everyone. I was diagnosed this year with having very mild symptoms of x-linked (they think) CMT type 2. My brother has it much more severely than I do. As a result of this my (new - August 1st) husband and I have made the decision to begin the…Continue

CT Question

Started by Restless in General. Last reply by Restless Sep 29. 2 Replies

     I haven't had a proper diagnoses  as of 1994.  It is for sure a neurological disease.  First the experts called it  CT disease, then they called it Periphal Neuropathy.  They are so close in the nature.  Is there somewhere I can get a proper…Continue

Happy CMT Awareness Month!

Started by YukiDev in General. Last reply by chad Sep 29. 1 Reply

By the way! Happy CMT Awareness Month to you all! In honor of the terrible things Charcot Marie Tooth disease does to a patient's feet, I'm posting a picture of my icky feet LOL Here's my high arches, numb toes, and my usually cold feet!I haven't…Continue

Tags: My, feet, Month, Awareness, CMT

Tongue speech pronouncing words

Started by Lola in General. Last reply by SubVet Sep 28. 8 Replies

HiAnyone having mild difficulty with speech feeling like your tongue gets in the way? I'm not referring to vocal cords just pronouncing certain words?Thanks lolaContinue

Not being taken seriously - grrr

Started by Tess in General. Last reply by SubVet Sep 28. 10 Replies

Happy Friday! I was just talking to a coworker and mentioned how sore my legs are from just walking across the parking lot.  I have told this particular person before that I have CMT and that is why I can't walk very far without pain.  He says to…Continue

Tags: CMT

Getting help and support

Started by YukiDev in General Sep 28. 0 Replies

I just wanted to keep you all in the loop: I've spoken with my high school's social worker about talking to my mom. She said she would try calling my mom, but I told her that if she can't do anything, I'm calling my local MDA after school

Mobile App and E-Book Available for Download

Keep in touch with friends. Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now.

Be inspired by the helpful tips and amazing stories of patients with rare diseases. Get the e-book "We're in This Together: Stories & Tips from Patients with Rare Diseases" HERE.

Latest Activity

Wendy Krauss left a comment for caddyo
"Welcome to the group caddyo"
21 hours ago
caddyo updated their profile
21 hours ago

CM left a comment for caddyo
"Welcome Welcome! We are in the same boat! Pardon the pun! At least you knew and had a starting…"
22 hours ago
caddyo is now a member of Charcot Marie Tooth (CMT) - Online Support Group
22 hours ago
Doaa posted a status
"thanks everybody for your kind support and information"
Doaa updated their profile
nugget is now a member of Charcot Marie Tooth (CMT) - Online Support Group
jp replied to jp's discussion PGD and IVF
"As far as we know there aren't any issues with either our eggs or sperm. Should there be, then…"

Top Content 

1 Not being taken seriously - grrr

Not being taken seriously - grrr

Posted by Tess on August 21, 2015

2 Small Nerve Fiber Involvement in CMT1A

Small Nerve Fiber Involvement in CMT1A

Posted by chad on September 20, 2015

3 Prognosis Negative

Prognosis Negative

Posted by Karen on July 22, 2015

4 PGD and IVF


Posted by jp on September 30, 2015

5 CT  Question

CT Question

Posted by Restless on September 29, 2015


© 2015   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service