Claire found out she had Charcot-Marie Tooth (CMT) when she was a teenager. She shares the history of the condition within her family, her struggles with mental health, and the purpose she’s found in volunteering for her local community.
“Being diagnosed with CMT as a teenager was difficult to cope with.”
A lot of people on my mum’s side of the family have CMT. My gran, mum and auntie knew they had some kind of condition, but doctors always insisted it wasn’t hereditary. It wasn’t until I was diagnosed with CMT at 12 years old that everyone else in the family was able to finally get a diagnosis.
Keeping it in the family
My family were told there was a 50/50 chance of passing the condition on to their children, which is why so many of us have CMT. We have several cousins who also have it, as did my little brother, who sadly passed away from epilepsy in 2007. My son also has the condition and was diagnosed at nine years old. He’s 16 now and is doing really well thanks to his amazing children’s physio team, but it’s horrible knowing I’ve passed this on to him.
The pain and fatigue can be difficult to manage
I started having pain in my calves and struggled with walking from about 10. I received physio until I was 16, but after that I was just left to get on with it. We live in the Scottish Highlands, so knowledge and resources are much more limited up here.
Nowadays, I have to wear orthotic splints to help my drop foot. Without them I can only walk holding on to the furniture around the house. I get a lot of pain in my calves and back due to the way I walk, and I have restless leg syndrome. I get sciatic pain in my lower back that travels down my legs, as well as pain and weakness in my hands which means I struggle to do chopping or open things. My most recent symptom that I’m really struggling with is fatigue. It’s not just tiredness. I fall asleep on the sofa and wake up sometimes having slept through dinner.
Finding a passion in volunteering has been key for me
I’ve been volunteering with HomeStart for five years, a charity that offers support to parents facing challenging times.
“It’s really helped me build in confidence to find something I am so passionate about.”
Due to the work, I’ve done on my own mental health, I’m often the one who gets signed up to support people who are going through similar things. When you’ve been through difficulties like this yourself, you just want to help other people.
I also volunteer with local women’s health groups and attend a local My Self-Management group, which is for anyone with long term conditions, and has been an amazing help to me.
I’ve struggled with my mental health since I was 12
Being diagnosed at the same time as transitioning to high school and going through normal teenage changes hit me hard. I got picked on a lot and called names like ‘gimpy’ at school.
“By 13 I was diagnosed with anxiety and depression and was put on antidepressants, which was very young back then.”
I went to a child psychiatrist on and off for a while. As I got older, I started having panic attacks. It got to the point in early adulthood where I couldn’t even put the bins out or eat dinner without having a massive panic attack for no reason. I’d have days at a time without sleep and I struggled to take medication to help me as my anxiety made me paranoid about them.
Eventually I got it under control, but it hit me again when my son started school.
“I began Cognitive Behavioural Therapy (CBT) then which was a huge turning point for me. CBT really helped me start to accept my condition.”
Because of this, I started wearing my ankle braces. I’d refused for so long to do anything that made me look different because I just wanted to be normal, but now I embrace my disability and raise awareness of CMT. Last year, for our CMT awareness month, I got our local hotel to light up in aid of the condition and got involved in articles with CMT UK.
I’m still a work in progress, but I’m much happier with who I am now.
