In profile – MDI member, Thomas Byrne, shares his story of living with the neuromuscular condition, Charcot-Marie-Tooth

August 10th, 2023

I am 52 and from County Laois. I have worked with Citizens’ Information since 2006 and I also do some voluntary work with Cuisle Cancer Support Centre. I go to Beaumont Hospital ever year for a check-up with consultant neurologist, Margaret O’Brien, as I have the neuromuscular condition, Charcot-Marie-Tooth (CMT). I also have dyslexia. My family support worker from Muscular Dystrophy Ireland, Marie Kealy, is in regular contact with me and is a great support.

As a child, I had club foot and they think this was associated with the CMT diagnosis. I was diagnosed in Temple Street at three or four years of age. I had to get different operations at Cappagh Hospital, Dublin, to fuse my feet and get the cartilage removed. Then I wore a brace. I now can wear normal, strong, supportive footwear. I know what to watch out for now. I always make medical professionals aware of my diagnosis. I feel sometimes medical professionals are not aware of CMT.

The only medical aids I require are insoles for my shoes. It is a long process to get them but I know in advance when I will need them changed so I start the process early so I am not without them. I have a blue badge  (Disabled Person’s Parking Card (citizensinformation.ie)  (Niall, please embed link) and I drive to work in an automatic car. I get tiredness in my lower limbs and I cannot climb stairs or steps. When going to different places, I always check and plan ahead to make sure they are accessible. I did not apply for a Primary Medical Cert, which you need in order to qualify for tax relief under the Disabled Drivers’ and Disabled Passengers’ Scheme, (Niall, please embed link) as I feel the rules are out-dated and not all disabilities are recognised. It put me off applying as I feel I didn’t fall into any of the criteria. I do a lot of walking and keep active. My limbs are in good working order. I do have high potassium and they think it is coming from the CMT as I have none of the usual health conditions that cause it. They have been doing genetic tests for the last three or four years which were sent to Germany to try and find out more about this and the results are now with my consultant.

The support I have received from MDI over the years has been very valuable. It is only in the last 10 years that I started looking into my condition. I did not know much before I started meeting more people with neuromuscular conditions, and during Covid I took part in the quizzes MDI ran. Before, if I was struggling, I did not know where to go for support. Now I know I can go to MDI. I hear about different member events that are happening, and Marie keeps in contact. I can discuss medical problems with her and she gives me advice on who to contact. Through my job, I am aware of support that people with disabilities are entitled to, so I like my job and being able to make people aware of entitlements for people with disabilities. It is good for mental health to get out too.

Thanks to you and MDI for giving me this opportunity and hopefully my story will help someone else.

Categories: In Profile