About CMTUK
What is CMT
Charcot-Marie-Tooth (CMT) is a group of hereditary (genetic) conditions that damage the peripheral nerves.
These nerves are responsible for passing on commands from the brain to the muscles in the arms and legs, and for passing information back to the brain about sensation – pain, heat, cold, and touch.
CMT causes the muscles in the legs and arms to waste away, which can lead to problems with walking, standing, and balance. Hand function and strength are also affected. CMT gets worse over time, and there is currently no cure.
Who we are
CMTUK is the UK’s only national charity dedicated to supporting people living with CMT and related conditions. We are a membership-based organisation committed to improving lives, raising awareness, and connecting the CMT community.
Our community includes people living with CMT, their families and carers, healthcare professionals, and researchers – all working together to share knowledge, guidance, and support. We believe that nobody should face CMT alone, and we provide reliable information, practical advice, and a welcoming network for everyone affected by the condition.
CMTUK is completely funded by donations, and we rely on the generosity of supporters to continue our work. Every contribution helps us provide support, fund vital research, and raise awareness to improve the lives of the CMT community across the UK.
Click here to see the people who make CMTUK what it is.
How We Help
Support and Information
We run a dedicated helpline staffed by experienced staff who can help with everything from managing symptoms to navigating support systems. We provide up-to-date information, leaflets and guides—for individuals, families, carers, medical professionals and schools.
Community and Peer Support
We offer regional support groups that meet both in person and online; active social media groups; groups for young people (CMT Kids & Big Kids) so those affected by CMT can connect, share, learn and feel less isolated.
Research and Medical Advocacy
We initiate, coordinate and support research into CMT and its effects. We also stimulate medical education about CMT, so that treatments, diagnosis and care keep improving.
Membership and Accessibility of Services
Since October 1, 2023, we moved from a mandatory membership fee to a discretionary donation-based model. This means membership and all associated support is no longer blocked by cost. Everyone can access what they need, whether or not they can donate.
Awareness and Education
We work to spread awareness of CMT among the public, healthcare professionals, and educational settings. We produce our magazine ComMenT, organise Health & Wellness days, and host an annual Conference to share the latest in research, practice, and lived experience.
Symptoms of CMT
CMT is a hereditary condition that affects the nerves controlling muscles and sensation in the limbs. Symptoms usually appear in childhood, but some types may not become noticeable until adulthood. Early signs often include subtle difficulties with walking due to muscle weakness or reduced sensation in the feet.
Muscle Weakness
Muscle weakness is a common symptom of CMT and typically affects the feet, ankles, and lower legs first. Key points include:
- Foot drop – difficulty lifting the foot or toes, which can make walking challenging and increase the risk of trips and falls.
- Slimmer lower legs – muscles may shrink over time, giving the legs a thinner appearance.
- Weakness can gradually rise toward the knees. Most people can still walk, but some may need walking aids as they age.
- Hand weakness – fine motor skills, like writing, using buttons, or handling small objects, may become harder over time. Hands are usually affected later than the feet, though some rare types of CMT impact the hands first.
Bone and Foot Changes
Weak muscles can lead to changes in foot and bone structure, which may affect balance and mobility:
- High arches or flat feet – both can change how weight is distributed on the feet.
- Hammer toes – curling of the toes due to muscle imbalance.
- Hip dysplasia – the hip socket may not fully cover the thigh bone.
- Scoliosis – in severe cases, the spine may curve.
- Scoliosis – in severe cases, the spine may curve.
Sensory Changes
CMT often affects sensation, particularly in the feet and hands:
- Numbness or tingling sensations.
- A feeling similar to poor circulation, where extremities may feel very cold.
- Sensory changes combined with muscle weakness can make daily tasks requiring fine motor control more difficult.
- Sensory changes combined with muscle weakness can make daily tasks requiring fine motor control more difficult.
Pain
Two types of pain are commonly reported in CMT:
- Muscle and joint pain – caused by strain as muscles weaken and movement patterns change.
- Neuropathic pain – caused by nerve damage, often described as burning, tingling, or sharp pain.
- Neuropathic pain – caused by nerve damage, often described as burning, tingling, or sharp pain.
Both types of pain can be managed with the right treatment and medications, helping people maintain mobility and quality of life.
Diagnosis & Genetics
CMT is caused by changes in genes that affect the peripheral nerves, which connect the brain and spinal cord to the rest of the body. These nerves carry messages and control movement, much like electrical wires carry signals.
Peripheral nerves have a core, called an axon, surrounded by an insulating layer called the myelin sheath – similar to the plastic coating around a copper wire. Different types of CMT affect these structures in different ways:
- CMT type 1 – the myelin sheath is damaged.
- CMT type 2 – the axon itself is damaged.
When the exact genetic change is known, CMT is divided into further subtypes. For example, CMT1A, the most common form, is linked to a change in the PMP22 gene.
How CMT Is Inherited
Most forms of CMT (types 1 and 2) follow an autosomal dominant pattern, meaning a person only needs to inherit the gene change from one parent to develop the condition.
An exception is CMTX, which is inherited through the X chromosome in an X-linked recessive pattern. Since males have one X chromosome and females have two:
- Males are usually more affected by CMTX.
- Affected males cannot pass CMTX to their sons, but affected females can pass it to their sons, who may develop more severe symptoms.
- Affected males cannot pass CMTX to their sons, but affected females can pass it to their sons, who may develop more severe symptoms.
For more details, visit our [inheritance and genetics page].
Getting a Diagnosis for CMT
CMT is usually diagnosed through a combination of:
- Physical examination – checking muscle strength, reflexes, and movement.
- Nerve conduction tests – measuring how well nerves send electrical signals.
- Genetic testing – identifying the exact genetic change and subtype.
- Genetic testing – identifying the exact genetic change and subtype.
Understanding the genetic type of CMT can help predict how the condition might progress and support family planning decisions. At CMTUK, we provide up-to-date information on genetic counselling, inheritance patterns, and new developments in research.
Early diagnosis allows people to access the right treatments, mobility aids, and support, helping them maintain independence and quality of life.
Managing CMT
A diagnosis of CMT can feel overwhelming at first, but it doesn’t mean life stops. People with CMT are athletes, parents, business owners, artists, and everything in between.
Although there is currently no cure, many people live full, active lives with the condition. With the right support, treatment, and adaptations, it is possible to manage symptoms and maintain independence.
At CMTUK, we provide practical advice on physiotherapy, mobility aids, foot care, mental health support, and more, so everyone can live well with CMT.
Access to a Healthcare Team
A multi-disciplinary healthcare team is essential for managing CMT. This team is often led by a neurologist and may include physiotherapists, occupational therapists, orthotists, and podiatrists. If you’re not in contact with a neurologist, speak to your GP about a referral.
Exercise and Physiotherapy
Exercise and stretching help maintain strength, flexibility, and balance:
- Mild, low-impact exercise such as walking, swimming, or cycling improves stamina and supports weight management.
- Heel-stretching and flexibility exercises prevent muscles from tightening.
- A physiotherapist can create a tailored exercise plan to suit your needs and abilities.
- A physiotherapist can create a tailored exercise plan to suit your needs and abilities.
Staying active reduces strain on weakened muscles and joints, helping maintain mobility and independence.
Orthotics and Mobility Aids
Orthotic devices can improve walking and reduce falls:
- Insoles, braces, or custom-made shoes provide support and stability.
- It may take time to find the right fit, so follow-up with orthotics services is important.
- For longer distances or managing fatigue, using a wheelchair or mobility aid can be helpful, though most people with CMT continue walking.
- For longer distances or managing fatigue, using a wheelchair or mobility aid can be helpful, though most people with CMT continue walking.
Foot Care
Foot care is vital because reduced sensation can mean injuries or sores go unnoticed:
- Check and clean your feet regularly.
- Avoid walking on injured areas to prevent infection or changes in foot shape.
- A podiatrist may be needed if foot ulcers or infections are frequent.
- A podiatrist may be needed if foot ulcers or infections are frequent.
Medication and Surgery
- Pain management: Medications can relieve joint and nerve pain.
- Surgery: In rare cases, corrective procedures can improve balance and mobility for severe foot deformities. Most people with CMT will not need surgery.
- Surgery: In rare cases, corrective procedures can improve balance and mobility for severe foot deformities. Most people with CMT will not need surgery.
Medication Safety
Some medications can worsen CMT symptoms. Always inform your doctor of your CMT diagnosis before starting new medications.
High-risk medications include certain chemotherapy drugs:
- Vinca alkaloids (e.g., Vincristine)
- Taxols (e.g., paclitaxel, docetaxel, cabazitaxel)
- Taxols (e.g., paclitaxel, docetaxel, cabazitaxel)
Other medications may carry a moderate risk, so doctors should consult a specialist team if there are concerns.
Join our Community
Becoming a member is one of the best ways to get involved and make a difference. When you join, you’ll receive:
- Access to exclusive resources and member newsletters
- Invitations to events, workshops, and conferences
- Opportunities to connect with others affected by CMT
- A chance to support research and advocacy efforts
Together, we can raise awareness, improve support, and work towards better treatments for everyone affected by CMT.
Discover more
CMT Kids
Find fun, safe spaces for children and young people with CMT to connect, share experiences, and build lifelong friendships.
Research
Explore the latest CMT research, clinical trials, and how we’re driving progress toward better treatments and understanding.
Members
Join our community for access to resources, support networks, events, and exclusive member benefits — all on a donation basis.
Your support keeps CMTUK going
CMTUK is a donation-based charity. We don’t receive government funding – everything we do is made possible thanks to the generosity of our community. Every pound helps us provide vital support, raise awareness, and fund research for people living with Charcot-Marie-Tooth disease.