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.

Need a Doctor or Specialist?

Blog Posts

Ben's Friends Monthly Newsletter - August 2014 Issue

Posted by Ben Munoz on August 26, 2014 at 8:37am 0 Comments

Just the Stats:

Communities: 35

Friends: 42,000+




In this issue…

Continue

Community Moderators

SK
Melinda Lang Melinda

 

Need a Second Opinion?

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

Videos

  • Add Videos
  • View All

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

use of your legs

Started by Jenny in General. Last reply by khill234 17 hours ago. 20 Replies

Hi im new here so hope im doing this right???? i use an electric wheelchair and im just wondering if this is the "norm"? is there many people who is unable to walk? x

Telemedicine Patient Education

Started by Ben Munoz in General yesterday. 0 Replies

Hi, everyone.  Dr. Joan Leafman from AT Still medical school in Arizona asks to help spread the word about some research she is conducting.  The survey is about Telemedicine Sessions for Patient Education.   If you are interested the link is here …Continue

Fatigue.

Started by Martha Carrier in General. Last reply by Phoebe yesterday. 10 Replies

 Hi, CMT community. Can anyone tell me if chronic fatigue is a curse of CMT? It doesn't matter how much rest I get I cant seem to get over it. I struggle to accomplish my work but sometimes I just wish I could find a supplement to help me.Continue

Copper wear?

Started by SK in General. Last reply by SK on Friday. 4 Replies

I have a Tommie Copper shirt and shorts that I wear when it's cool enough to wear under my regular clothing, and it seems to help a bit. There are all types of compression clothing and supports. Anyone else use them and feel a difference?…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

khill234 replied to Jenny's discussion use of your legs
"I have never seen a neurologist--can they help & how? Like you I have other issues--spinal…"
17 hours ago
jnj2008 replied to Jenny's discussion use of your legs
"PCM Thanks for the encouragement. I will eventually accept and allow the help. To all you out there…"
21 hours ago

Moderator
Ben Munoz posted a discussion

Telemedicine Patient Education

Hi, everyone.  Dr. Joan Leafman from AT Still medical school in Arizona asks to help spread the…See More
yesterday
PCM replied to Jenny's discussion use of your legs
"I really feel for you.  I too had a hard job accepting that my life would never be the same…"
yesterday
Phoebe replied to Martha Carrier's discussion Fatigue.
"Vitamin D3 supplement is a big help for me. Before taking it, I would be totally…"
yesterday
jnj2008 replied to Jenny's discussion use of your legs
"hi sorry it has taken me so long to reply. My vision has been very bad and today is the first one…"
yesterday
CM replied to Jenny's discussion use of your legs
"You know we are all struggling with some of the same issues but also each of us might have some…"
Saturday

Moderator
SK replied to SK's discussion Copper wear?
"Speaking of copper, I just read that copper deficiency can cause a problem absorbing calcium and…"
Friday

Top Content 

1 use of your legs

use of your legs

Posted by Jenny on August 16, 2014

2 Fatigue.

Fatigue.

Posted by Martha Carrier on August 26, 2014

3 scoliosis with cmt

scoliosis with cmt

Posted by taterbug80 on August 22, 2014

4 Anyone still have a few good days?

Anyone still have a few good days?

Posted by khill234 on August 10, 2014

5 How long did it take you to get a diagnosis, or are you still waiting?

How long did it take you to get a diagnosis, or are you still waiting?

Posted by SK on April 5, 2014

 
 
 

Help Us Help Others

Help Ben's Friends

Like & Follow Us!

Follow Me on Pinterest

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…
  • Add Photos
  • View All

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