In the UK, some 25,000 people are thought to have CMT (Charcot-Marie-Tooth disease), making it the most common inherited neurological condition. However, many people are not aware of CMT, even within the medical profession, which can make everyday living and early medical diagnosis more difficult.  In a recent survey created by charity CMTUK*, of over 300 respondents living with CMT in the UK, 67% felt that less than 10% of the UK population has heard of CMT.  That’s why the charity CMTUK has made it their mission to increase awareness of the disease, especially during October’s CMT Awareness Month.

CMT is an inherited neurological disease that affects the peripheral nerves.  Due to 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, and balance is often affected. Foot drop is also a common symptom, where the front part of the foot can’t be raised due to weakness.  CMT can also result in foot or hand deformities, which may need to be corrected with aids (orthotics or hand splints) and in some cases surgery.

In the recent CMTUK survey, 30% of people felt their CMT conditions started progressing before they were 20 years old, with the hardest symptom to deal with being muscle weakness (38%), followed by fatigue (16%) and foot drop (13%).  Thirty-three percent of survey respondents said they have had foot surgery and 41% said they have regular appointments with a podiatrist.  However, 70% felt that their GP had limited knowledge of CMT, and 14% felt that their GP had no knowledge of CMT.

Chief Executive of CMTUK, Simon Bull, said “As the UK’s only dedicated charity supporting people living with CMT, we know firsthand from our members that increasing awareness of CMT makes a huge difference to them.  For example, it can help work colleagues, family and friends be more understanding of the condition and how it affects them.  The medical profession isn’t as aware of the condition as we would wish them to be, with 70% of survey respondents feeling that their GP has limited knowledge of CMT, which makes it harder to get an early diagnosis and treatment.  There are over 120 variations of CMT: no two people experience CMT in exactly the same way, even if they have the same type, which makes it harder for medical professionals to diagnose and can lead to isolation.  There is lots of useful information on our website and social media channels that everyone can access, and we also have a range of helpful leaflets.  Our members are given an alert card, which explains the symptoms of CMT – ideal for when attending medical appointments or in a medical emergency.  We also support the medical profession with any support and information they may need for their patients.”

“Although there isn’t currently a cure for CMT, it is an exciting time with research and trials going on across the world, including the UK.  When people get a diagnosis, they may then be able to take part in these trials, helping get closer to a cure.  They can also join our CMTUK community, join our online groups, conferences and other events.”

Simon continues “Last October, our charity, CMTUK, moved from a subscription-based membership ‘fee’ to a discretionary donation-based membership, so that we could reach more people affected by CMT and remove any barriers to those seeking the charity’s support.  This resulted in a 25% increase in membership, allowing us to support 100s more people living with CMT in the UK. This year is our biggest CMT Awareness Month yet, with more members joining and lots of initiatives to spread the word of CMT.”

For more information about CMT and CMTUK, visit www.cmt.org.uk

*Survey details: results based on 334 respondents living in the UK with CMT, taken during October 2024.  If you would like access to further survey results, please contact Emma at Mushroom Marketing PR: emma@mushroommarketing.co.uk