Subscribe Now

By entering these details you are signing up to receive our newsletter.

Charity & advocacy

October is CMT awareness month in the UK

Every October, the charity CMTUK spreads the word as widely as possible throughout the UK about the condition of Charcot-Marie-Tooth (CMT).  Raising awareness helps the wider public to understand the condition more.  It can also help those living with CMT to get a quicker diagnosis (and treatment) by highlighting symptoms to health professionals. 

For more information on what’s happening during October and how you can get involved please, click here.

Please read on to find out more about the latest CMTUK research projects and news….

About CMT

Perhaps surprisingly, CMT isn’t a condition related to the teeth—Howard Tooth was one of the three doctors who first described the condition in 1886, and the condition gets its name from the three doctors who first described it.

Charcot-Marie-Tooth disease (CMT) is a hereditary condition that damages the peripheral nerves. These nerves run from the spinal cord to the extremities and 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 sensations, such as pain, heat, cold and touch. Because of the nerve damage, people with CMT may find that their muscles, particularly in their hands, arms, feet and lower legs become weaker over time, and the sense of feeling can become dull or numb in the same areas.

In the UK, some 25,000 people are thought to have CMT (approx: 1 in 2,500) making it the most common inherited neurological condition. Hereditary neuropathy with pressure palsy (HNPP) is a condition that is linked to CMT with comparable symptoms. 

What are the symptoms of CMT?

CMT affects people very differently, even within the same family.  Here are some of the more common symptoms:

🔎 It can cause the muscles in the feet, legs, hands and arms to weaken, which causes difficulty with walking, balance and hand function. 

🔎 People with CMT can have foot drop (difficulty lifting the foot at the ankle) or pes cavus (high arched feet).

🔎 It can eventually cause stiffened joints that result in deformities of the feet and hands.

🔎 Rarer symptoms can include breathing problems, sleep apnoea, scoliosis, hip dysplasia and vocal cord paralysis.

🔎 It may cause chronic pain and fatigue.

To find out more about CMT, diagnosis and management, click here.

What is the latest CMTUK research project?

CMTUK is currently funding research into CMT with the foot and ankle team at the Royal National Orthopaedic Hospital, Stanmore to help better understand the foot shape in patients with CMT.  The funds have been used to purchase a licence for cutting edge software which can model the bones of the foot in three-dimensions (3D), and use artificial intelligence to work out the relationship between the various bones and joints. The remainder of the funds were used to purchase the high-end computer required to run the software. 3D automated assessment of imaging is a new and rapidly evolving field of research which opens up novel methods for understanding diseases. 

In the last two months the team have already been able to demonstrate, using the software, that the deformities they most often see have more rotation and less bend than previously thought. This is important as it has the potential to alter the way we think about the disease and ultimately how we treat it. Results from first stage studies have been written up and presented at an international meeting and will shortly be submitted to a well-known scientific foot and ankle journal.  There are also numerous further research projects using the software underway.

Pictured: Matt Welck FRCS and Karan Malhotra FRCS, consultant orthopaedic foot & ankle surgeons at The Royal National Orthopaedic Hospital

What is the Future for CMT?

Simon Bull, CEO at CMTUK recently interviewed Professor Mary Reilly, Professor of Neurology, Department of Neuromuscular Diseases, UCL Queen Square Institute of Neurology, who stated “We are on the cusp of change in the way we view CMT.  Things will change—it is a very hopeful time.” 

Take a look at an excerpt of the interview here.  The full video will be broadcast on CMTUK’s Facebook page later in October and will also be added to this webpage.

How can we help you?

  • If you live in the UK and would like to request a free information or medical information pack, please do get in touch—we will post one to you in the next few days.
  • The CMT community in the UK can also become a member of CMTUK (it only costs £27 a year to join).

Would you like to connect?

Feel free to follow us on social media Facebook, Twitter and Instagram. Shares of our posts are especially appreciated to spread the word further about CMT.  Thank you.


About our charity, CMTUK

CMTUK is a small but national-reaching UK charity. We proudly support people living with Charcot-Marie-Tooth. We rely on fundraising donations to help us provide essential services to our community, make the wider community more aware of the condition and support further research.

For further details on CMTUK, visit cmt.org.uk or call us on 01202 474203

Skip to content