Charcot–Marie–Tooth Disease

Understanding CMT

My Experience of CMT

A summary of what CMT is and how it affects me as well as how I have gone about adapting and overcoming the many challenges it throws my way.

Charcot-Marie-Tooth disease (CMT) gets its name from the three doctors who first described it. Today, when people refer to CMT, they’re talking about a group of conditions that affect the nerves outside the brain and spinal cord, the peripheral nerves. In other words, CMT is a genetic problem with the body’s wiring system that connects your brain and spinal cord to your muscles and senses.

Because of this, many people with CMT experience things like muscle weakness, changes in feeling (like numbness or tingling), and challenges with walking or movement. The exact mix and severity of symptoms can vary a lot, depending on which type of CMT someone has.

A diagram showing the central nervous system and the peripheral nervous system which is the part affected by CMT

CMT isn’t something that can be cured, so living with it is really about managing the symptoms and finding ways to make everyday life a bit easier. Exercise and physiotherapy play a big role in slowing down muscle loss and keeping as much function as possible. Things like braces and orthotics (special inserts or supports) can also make a huge difference, especially when it comes to walking more steadily or taking part in other activities. Some people also use splints at night to stretch out their tendons - these tend to tighten up as muscles weaken, and that tightening is one of the main reasons walking can get harder.

Personally, I’ve always gone by the saying "use it or lose it.” For me, that means making sure I keep moving and working the muscles that are weakening, so I can hold onto as much strength as I can. When I was first diagnosed, I got into triathlon, and I truly believe that sticking with it has been a big reason why I’ve managed to stay stronger for longer, kept more independence, and been able to push back some of the challenges CMT can bring.

The orthotics worn by Charlie to help his cycling

I have a type of CMT called CMT X. Usually, this condition is passed down through families, but in my case, there’s no family history of it - it just showed up.

My symptoms started and progressed quite quickly when I was around 11 or 12. By the time I was 14, I had my diagnosis, after various muscle strength and nerve tests as well as genetic testing.

Things continued to change pretty fast through my teenage years. For me, the main symptoms are severe muscle weakness and muscle loss in my lower arms and hands, as well as in my ankles and feet (basically, anything below my elbows and knees).

Because of that, I walk with what’s called “foot drop,” which means I can’t lift the front part of my foot properly when I step. Walking takes a lot more effort and focus than it would for most people, and it makes me much more likely to trip, especially if I’m tired or not concentrating.

The weakness in my hands can make small, fiddly tasks, like doing up buttons, pretty tricky.

Charlie as a child running and smiling prior to diagnosis of CMT

Camp Footprint

Camp Footprint is an activity camp in the USA specifically for kids with CMT organised by the CMTA (Charcot-Marie-Tooth association). Camp footprint aims to empower children with CMT and give them the courage, hope, skills and community for living life to the fullest and reaching their potential.

I first attended camp footprint in 2017 as a camper when I was 16 years old and have attended every year since now making the transition onto its staff as a councillor and then this year as a Cabin Captain. For me the camp was life changing and gave me so much confidence in myself and in living with CMT. The community there is like nothing else I've ever experienced, and I have made so many close friends for life.

Charlie in a pool at a pool party at Camp Footprint 2025