Welcome

Welcome! You're not alone.

If your family has been affected by Charcot Marie Tooth, consider Charcot Marie Tooth Support Network second home.

NOW....GET 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
6. Follow us on Twitter
7. Become a fan to our Facebook

Got some QUESTIONS? 
Check our FAQ PAGE.

Read More from our  First-Time-User Guide.

Concerned About Privacy

Since content and usernames are searchable on this site, you may protect your anonymity by creating a unique username.

To change username, click here. 

Need a Doctor or Specialist?

Blog Posts

Ben's Friends Monthly Newsletter - November 2014 Issue

Posted by Ben Munoz on November 27, 2014 at 8:38pm 0 Comments

Just the Stats:

Communities: 38

Friends: 44,000+

GratitudeThank…
Continue

Community Moderators

SK
CM

 

Disclaimer

All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health never disregard professional medical advice or delay in seeking it because of something you have read on this site.

Birthdays

Birthdays Today

Please Be Kind & Use Appropriate Language

Let's Keep it Nice & Clean
1. No Spam
2. No Personal attacks
3. No Offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos)
4. No Profanity, sexual references and illegal activity subject matter in the Chat Room.   
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. There are many sites for discussing religion and politics. This is not one of them. Divisive posts about religion and politics will be deleted.
Thanks for your cooperation.
 

ClinicalTrials.gov Studies

Loading… Loading feed

Gift Store

 

What is Charcot-Marie-Tooth?

Charcot-Marie-Tooth (CMT) is a rare, inherited, neurological disorder which affects the nerves, resulting to loss of muscle and touch sensation. CMT affects the feet, legs, hands and arms.

Charcot-Marie-Tooth (CMT)  is a genetically and clinically heterogeneous group of inherited disorders of the peripheral nervous system characterized by progressive loss of muscle tissue and touch sensation across various parts of the body. CMT disease is one of the most common inherited neurological disorders affecting approximately 1 in 2,500 people equating to approximately 23,000 people in the United Kingdom and 125,000 people in the USA.

Forum

Rebooting

Started by Oxytosin in General. Last reply by Oxytosin yesterday. 4 Replies

A lot depends on how I start the day. I use a technique which my counsellor with MS has taught me called ‘rebooting’. What she means is that when I hit a pain barrier or it all seems too difficult, I stop for a second, breath from the stomach and…Continue

CMT Awareness

Started by JW in General. Last reply by CM yesterday. 2 Replies

Hello,I am a 3rd year podiatry student in Ireland and as part of my studies I have to present a poster on a condition we have come across in clinic. I have decided to do CMT as I came across a teenager with suspect CMT that we referred on. I was…Continue

Sacral cyts or tarlov cysts or meningoceles

Started by Karen in General. Last reply by CM Dec 12. 9 Replies

Today I was diagnosed with sacral cyts. Tarlov or meningoceles cysts. I have several back problems,too. They are bulging discs. I was wondering if anyone else has this problem with the addition of CMT? From reading,this is classified as a rare…Continue

CMT - NEFL Gene

Started by brock1 in General. Last reply by tga Dec 8. 5 Replies

Hi everyone I was diagnosed with CMT 16 years ago but it was only a few years ago that they discovered the faulty gene NEFL. I just wondered if there is anyone on here with the same who would like to share their stories?? look forward to hearing…Continue

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.

Welcome to LivingWithCMT.org!

If you or a loved one has been affected by Charcot-Marie-Tooth (CMT) also known as Hereditary Motor and Sensory Neuropathy (HMSN), this is the place for you. The purpose of our community is to provide patients, families and friends affected with CMT/HMSN a place to find support, information, and most importantly a place to connect! Please feel free to suggest new ideas, because this is YOUR community.

Allow this community to become a part of your life. . .

1. Share your story on "My Page" and personalize it to reflect who you are!
2. Upload pictures and videos easily.
3. Start a new discussion on "Forum" or contribute to existing discussions.
4. Welcome our new members with a comment on their page!

*Please keep in mind this site is not intended to diagnose, prescribe, or replace the service of your physician, but solely to give you information to help enable you to make informed decisions about your healthcare with guidance of healthcare professionals.

This community is brought to you by http://bensfriends.org/

Latest Activity


Greeter
braylin's gramma left a comment for Wichitamann
"Welcome Wichitamann, we are glad your joined us!"
14 hours ago
Scott Orn left a comment for Wichitamann
"Wonderful welcome Wichitamann! One tip, if you have specific questions it's best to start a…"
14 hours ago
Oxytosin replied to Oxytosin's discussion Rebooting
"Yes, my counsellor talks about breathing from the stomach and breathing through to the back.…"
yesterday

Moderator
CM replied to JW's discussion CMT Awareness
"I had extremely high arches in young years and walked on my toes 99% of the time. Flat shoes…"
yesterday
tga replied to JW's discussion CMT Awareness
"One thing l have read about is the flattening of feet as a precursor to the high arches. My…"
yesterday
Tom replied to Oxytosin's discussion Rebooting
"That's a really good idea.  Recently I have started to look into "Mindfulness"…"
yesterday

Moderator
CM left a comment for Wichitamann
"Welcome Wichitamann, Glad you have an interest in learning and helping to bring advocacy and…"
yesterday

Moderator
dancermom left a comment for Wichitamann
"Welcome, Wichitamann, to this supportive community. Feel free to open a discussion to introduce…"
yesterday

Top Content 

1 What would you like others to know about CMT?

What would you like others to know about CMT?

Posted by SK on December 1, 2014

2 Rebooting

Rebooting

Posted by Oxytosin on November 24, 2014

3 Hi missed ya'll

Hi missed ya'll

Posted by jnj2008 on December 6, 2014

4 I have a friend who's a wonderful person

I have a friend who's a wonderful person

Posted by Oxytosin on November 17, 2014

5 A day of giving thanks...

A day of giving thanks...

Posted by SK on November 26, 2014

 
 
 

Help Us Help Others

Help Ben's Friends

Like & Follow Us!

Follow Me on Pinterest

Give Us A Review

Bens Friends

To Support LivingwithCMT.org, Click an Ad. Or Two.

Join Ben's Friends

Are You in Crisis?

First take a deep breath, then call the National Suicide Prevention Hotline immediately.  1-800-273-TALK for members in the United States.

For international members, please visit http://www.suicide.org/international-suicide-hotlines.html for information on where to call.

"To Know The Joy of Giving"

Photos

Loading…

Partners

BensFriends.org is proud to partner with a number of organizations to help our members in various areas, including legal, financial, research and medical. 

Know more about our PARTNERSvisit this link.

About

© 2014   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service