Which advice would you give to someone who has just been diagnosed with Charcot-Marie-Tooth Disease?

See some advice from people with experience in Charcot-Marie-Tooth Disease to people who have just been diagnosed with Charcot-Marie-Tooth Disease

Posted May 21, 2018 by Joe 4050

Advice? Be optimistic and move. More move.

Posted May 22, 2018 by Gabriel 1700

Find support. Others that have CMT, chat rooms, FB groups, and family. Make sure you do your research on the disease. Ask questions of multiple doctors and specialists. Known that There will be a grieving period. It can take time to accept the diagnosis.

Posted May 22, 2018 by Dawn 4050

Learn about your condition, and not from google! Find the local charity supporting people with your condition and get their information. Talk to others with the condition through social media.

You are not alone, there are more of us around than you might think.

And it’s not the end of the world, you can have a good life despite the condition, and remember it is not a life limiting condition. If you exercise as much as you are able, you can improve your fitness and delay progression

Posted May 23, 2018 by Karencmt 2620

Don’t worry. It’s not as bad as you might think, it’s not anything to do with your teeth. You need to make sure you have a lot of rest and make sure you have a lot of genetic testing done if you would like to know what type you have. Knowing what type you have will let you know where it came from and your family and how fast it will progress for you. Along with how it might be passed to your children in the future. Be prepared to feel weak some days and stronger than next. Don’t do too much to hurt yourself. You need to push yourself but not too far.

Posted May 23, 2018 by SavShelton 2550

Read up on it. Get the CMT book from the CMT-UK group.

Posted May 29, 2018 by Daniel 4200

Stay positive and stay active

Posted Dec 8, 2019 by Bob 1400

Find professionals familiar with treating CMT or neuromuscular diseases not all Drs. are created equal! READ!!! and become your own advocate, no one knows you as well as you do. Remember when joining a support group either online or in person it can become overwhelming quickly. Support groups are great for sharing experiences, venting to sympathetic ears and finding resources. But most people who post in groups have been symptomatic for sometime and tend to represent a more severe end of the symptoms spectrum. Symptoms vary a great deal with CMT even within the same family.

Posted Feb 7, 2020 by Roberta 1900

Learn everything you can and get self started on a routine.

Posted Feb 8, 2020 by Rhonda 1300

ASK NUMEROUS QUESTIONS OF MEDICAL PROVIDERS AND OTHERS WITH CMT. BE WILLING TO CHANGE PROVIDERS UNTIL YOU FIND ONE, OR A TEAM, WHO NOT ONLY SEEM TO KNOW THE DISORDER, BUT KNOW THE EMOTIONAL/PSYCHOLOGICAL COSTS OF THE DISORDER.

Posted Feb 9, 2020 by Jim 3000

Find a knowledgeable neurologist. Visit a CMT Center of Excellence for a baseline, genetic testing and prescriptions.
I don’t know if much advice has been passed on to me.
I did attend a CMT conference a year ago. What I heard there was great. Some of the most knowledgeable doctors spoke there. It was also nice as I got to meet others with CMT. No one in my immediate family has it. I feel very lonely with this disease. There is a CMT Facebook site that is very helpful.

Posted Feb 13, 2020 by Linda 1550

Translated from spanish Improve translation

First do not lose heart and after that channelling his energy in the treatment, and then the ejercitacion part of your daily routine

Posted Sep 4, 2017 by Lorena 2000