Are tremors a symptom of CMT? If so, will everyone in my family have tremors if I do?

Tremors are fairly common in people with CMT, and can intensify when the person is nervous, cold or tired. CMT expert neurologist, Dr Richard Lewis writes, “Clinically, when someone has CMT and a tremor, they sometimes call this Roussy-Levy Syndrome. Tremors are thought to occur because of decreased sensory input to the brain about where […]

Read More

Ulcers & CMT

I have an ulcer on my foot that will not heal. Is this typical of CMT? Dr. Joseph Gregory Stilwell, DPM writes: Yes,ulcers can be quite common with CMT. Oftentimes because a bone is prominent, and taking excess pressure- irritation occurs.  Then, with decreased sensation and other changes in the skin along with possible diminished […]

Read More

CMT Awareness Month Quiz! New Questions – 2019

1) Charcot-Marie-Tooth Disease (CMT) is also known as: a. Inflammatory Nerve and Muscle Syndrome b. Hereditary Motor and Sensory Neuropathy c. Funky Foot Disorder d. Chronic Tendinopathy with fatigue 2) How many different inheritance patterns does CMT have? a. 1 b. 2 c. 3 d. Too many to count. 3) Can CMT skip generations? a.Yes […]

Read More

Pony Takes Stand to End CMT

OUR STORY – Yohan and I had so much fun trail riding when we were younger. Oh, the stories we could tell!! I’ll never forget the time I stepped in a bee’s nest and ran for my life with Yohan on my back! He held on to my mane and stayed on. Phew! Close call! […]

Read More

CMT: So Much More Than Hands and Feet!

  “What’s up with the knee brace?” I asked 12-year-old Rylee, who was visiting from Pennsylvania for a couple of days. Head down, in a whisper, she told me, “My knee keeps popping out of joint. It hurts really bad when that happens. ” Just the thought of having my patella on the side of my […]

Read More

In Flora’s Memory – Just Say It! Again and Again and Again!

“My high school years?” she shuddered. “After the doctors diagnosed me with polio at 13-years-old, they wanted to straighten my misshapen feet. So, for the next 5 summers in a row, my school vacations were spent either in the hospital or at home, immobilized, with heavy plaster casts weighing me down.”  With raspy, uneven breath, […]

Read More

Raising Kids With CMT-Where In The Heck Is the Manual?

Last week, I purchased a top-of-the-line 4K LED Smart TV with enough options to bedazzle even the most technologically gifted.  Some of the features were intuitive enough that I proudly disregarded the instruction manual altogether.  To my dismay, I soon discovered that a good number of even the simplest functions were complicated, puzzling and downright […]

Read More