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June 2014 Community Newsletter

Posted by Ben Munoz on June 29, 2014 at 9:33am 0 Comments

Summer - the time of the year where some of our wonderful and fun memories are made. As a quote goes, "Life without love is like a year without summer."  Spend some time with your loved ones, enjoy the sights and sounds of nature and feel the…
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SK
Melinda Lang Melinda

 

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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.

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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

finding Housing

Started by jnj2008 in General. Last reply by jnj2008 10 hours ago. 2 Replies

Hi everyoneI don't know if anyone has had this problem before or not but maybe someone out here can help us.  Our landlords right now don't know that I already get my disability check because they think they are entitled to the whole thing. They…Continue

Chairs, do you have a favorite?

Started by SK in General. Last reply by jnj2008 16 hours ago. 11 Replies

With having a bad back, finding the right chair is a challenge! I'm like Goldilocks going from one to the other! The longest periods I spend sitting are here on Ben's Friends and I have a special chair which I also wheel around to the kitchen and…Continue

PXT3003

Started by HM in General. Last reply by SK 16 hours ago. 49 Replies

Hi!Pharnext is developping their pleotherapeutic medication PXT3003 for CMT1a.  http://www.pharnext.com/pipeline/cmt-programPhase II was positiv. Look key facts:  …Continue

Which type of CMT do you have?

Started by SK in General. Last reply by SK yesterday. 21 Replies

Though most of you have probably mentioned this in one of your responses or posts, if you have no objections, please tell me again. As you all know, I do not have CMT, and am still learning about it. I can read and read, but I learn more from…Continue

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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.

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Latest Activity

dkel9307 left a comment for braylin's gramma
"Hi Braylin's Gramma Thanks. Does she live in Adelaide, South Australia...or another part of…"
2 hours ago
jnj2008 replied to jnj2008's discussion finding Housing
"Thanks for the encouragement. I would love to have a social worker I don't even have one of…"
10 hours ago
braylin's gramma replied to jnj2008's discussion finding Housing
"Hi! Have you got a social worker? Or do you have free law services in your area for low income…"
16 hours ago
braylin's gramma left a comment for jnj2008
"Your welcome! Always glad to make new friends."
16 hours ago

Moderator
SK left a comment for jnj2008
"I'm very pleased to be your friend. Everyone here has become very near and dear to me! So glad…"
16 hours ago
jnj2008 left a comment for braylin's gramma
"Thanks for accepting me and becoming my friend."
16 hours ago
jnj2008 left a comment for SK
"Thanks being my friend."
16 hours ago
jnj2008 replied to SK's discussion Chairs, do you have a favorite?
"Thanks for the tip about making the writing bigger on here I will give that a try. Yes it does seem…"
16 hours ago

Top Content 

1 Which type of CMT do you have?

Which type of CMT do you have?

Posted by SK on July 11, 2014

2 Is there a time of day when you are at your best/worst?

Is there a time of day when you are at your best/worst?

Posted by SK on June 30, 2014

3 Fatigue

Fatigue

Posted by Tom on July 6, 2014

4 Hammertoes?  How many have them and did you have surgery?

Hammertoes? How many have them and did you have surgery?

Posted by SK on July 1, 2014

5 Pain and BNS combo (pxt3003)

Pain and BNS combo (pxt3003)

Posted by HM on July 13, 2014

 
 
 

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