“The help from Muscular Dystrophy UK has ensured I can live day to day” – Jamie’s helpline story

Jamie lives with Charcot Marie Tooth disease (CMT). He got in touch with our helpline when he was looking for support with his condition. He talks about his experiences at school, work and navigating the Personal Independence Payment (PiP) process. PiP payments are extra everyday benefits that help you with the financial costs of living with a disability.

Living with CMT has limited areas of my life. Some of the everyday things that people without my condition take for granted, aren’t always possible for me. I'm not going to say I've had a hard life because in the grand scheme of things I really haven't. But my condition has affected me both physically and mentally.

I was born with Charcot Marie Tooth disease (CMT), which is one of a group of genetic conditions affecting the peripheral nerves that connect the brain and spinal cord to the rest of the body.

I was diagnosed very young. As a child, I needed several operations on my feet to help me manage my condition, which caused me pain and discomfort.

I've never felt I fitted in. I think that’s because people don’t understand my condition properly. At school, at work, at home, anywhere really. At school, I was mocked by my teachers who called me clumsy and lazy, and other children because I wore splints on my legs.


My experiences in the workplace

As an adult, I continued to experience negativity from other people because of my condition. I felt like I was less valuable and less important at work. In 2019, I was made redundant after years of being stuck in what felt like an unhealthy work environment.  

I had some minor jobs following this, where unfortunately I continued to experience a difficult and negative work environment. One that stays with me, is when I was working at a car dealership and the manager mocked how I walked and complained about the speed I was walking. So, I walked out.

In another job interview, I explained to the interview panel that I wear shoes with special insoles to support my feet and help me manage my condition. They said this wasn’t an issue, but then, two weeks later, the employer explained I had to leave the company as my shoes weren't appropriate – despite my role being desk based.

When I was working, I struggled with the impact of my condition which often left me in bed unable to do anything due to the pain. Now that I’ve left employment for these reasons, I think this has helped my physical and mental health.


“My PIP and benefits help me to get by”

My mum told me about Muscular Dystrophy UK (MDUK), having been in touch with the helpline previously herself. She suggested I reach out to find out about the support available to people living with CMT.

I phoned the helpline because my Personal Independence Payment (PIP) was due for renewal. There had been a change in my condition, so I wanted to find out if they could support me through this process. I spoke to Kyri on the phone, and she helped me go through the application form.

I received the PIP award review form a few months later and the helpline team continued to support me with checking and filling out the paperwork. They also provided me with a supporting letter. With their help, my review was successful. I was also awarded the mobility component, which meant I could get my blue badge.

This year, my PIP award was due for another renewal, so I got back in touch with the MDUK team. They provided the same support all over again, talking it through on the phone, helping me with the forms, and writing a new letter.


“I fear without the support from Muscular Dystrophy UK, I wouldn’t have my benefits.”

The help from MDUK has ensured that I can live day to day. With the financial support from PIP, I can keep up with the costs on my house. The increase in my PIP payments also helped to secure my blue badge, which is an essential lifeline for me. Without it, I am completely stranded at home.

If you need help and advice, contact MDUK. Thinking about the help I’ve received makes me quite emotional. The charity, and most notably Kyri, have supported me an unbelievable amount. I really felt listened to. I am very grateful for the help I have received and continue to receive.


Having the right information and advice  can make all the difference. To get help like Jamie, contact our advocacy and helpline team. They are here to help you.

Call: freephone 0800 652 6352

Email: info@musculardystrophyuk.org

We are here for everyone, but we know support isn’t one-size-fits-all. We take the time to listen to every individual, so we can tailor our support to you.