CMT Awareness Month 2025 – More Than You Can See
October is CMT Awareness Month in the UK, and here at CMTUK we’re shining a light on Charcot-Marie-Tooth disease (CMT) – the most common inherited neurological condition that so many people have never even heard of.
This year’s theme is More Than You Can See, and it captures something really important. CMT isn’t always visible. While some people might use AFOs, mobility aids, or wheelchairs, many of the toughest parts of living with CMT are hidden from view.
What is Charcot-Marie-Tooth disease?
CMT is a group of inherited neurological conditions that damage the peripheral nerves – the network that carries messages between the brain, spinal cord, and the rest of the body.
When those nerves don’t work properly, the messages get weaker or don’t get through at all. This can make muscles weaker, affect balance and coordination, and cause changes in sensation like tingling or numbness. Some people also live with pain or extreme fatigue that impacts their daily life.
In the UK alone, over 25,000 people are thought to be living with CMT, yet it remains widely misunderstood. That lack of awareness can make the condition even harder to live with.
From the outside, you might not always notice that someone has CMT. They might look fine, but feel exhausted after a short walk. They might smile through a conversation while dealing with nerve pain that never really goes away. They might seem confident and capable, but inside, they’re battling the frustration and anxiety that come with a lifelong condition.
These hidden challenges are why awareness matters so much. Without it, people can be left feeling isolated or misunderstood by friends, teachers, employers, or even healthcare professionals.
Why awareness makes a difference
By raising awareness, we can help people get diagnosed earlier, encourage more understanding in schools and workplaces, and ensure families and individuals feel part of a community that truly understands them.
CMTUK exists to provide that support – through our helpline, online forums, information events, and resources designed to make life with CMT a little easier.
This October, we’d love for you to join us in making CMT visible. Talk about it with friends or colleagues. Share our stories and resources online. Or simply take a moment to learn more about the invisible aspects of CMT. Every conversation, every share, and every show of support helps us spread the message: CMT is more than you can see.
Together, we can make sure that nobody with CMT feels invisible.
Team CMTUK