DEBILITATING pain can stop someone in their tracks, but one Cork mum is determined not to let a rare neurological condition define who she is.
Marlane O’Sullivan, a 32-year-old mother to seven-year-old Hayley, was diagnosed at 15 with Charcot-Marie-Tooth (CMT) disease, which affects one-in-2,500 people.
Marlane O’Sullivan who suffers from Charcot -Marie -Tooth disease with her daughter Hayley in Midleton. Picture:Des Barry
It causes weakness in the feet, ankles, legs and hands, leads to muscle wastage and frequent falls due to coordination problems.
Despite all the problems that can manifest with CMT, Marlane incredibly took to the stage as a fitness competitor in Cork and Limerick this year, following a gruelling weight training regime.
September is International CMT Awareness Month and Marlane, who lives in Midleton, said she wanted to talk about it publicly. She added that she felt it was her duty to show solidarity with others suffering with CMT.
The business and marketing graduate said:
“It’s a bit daunting putting it out there for everyone to see but I’ve hidden it for a long time. When people ask why I’m limping, I used say I pulled a muscle.
“But I’m starting to be more open about it now as I want to be a positive role model for Hayley. The condition has gotten progressively worse.
“My neurologist recommended to keep up the weight training as it might help.”
With the help of one of Cork’s top trainers, Jim Benskin of JB Nutrition and posing coach Patricia Kalina, as well as support from family and friends, Marlane aimed to not only combat muscle loss but to take to the stage among elite fitness competitors in Cork, which she did in May.
Marlane O’Sullivan
“I remember that moment before going on stage, I was terrified of getting up and down the steps and asked one of the staff to help me by giving me their hand. There is awful anxiety associated with it. I find many leg exercises very difficult, I can’t run and find it very difficult to go up and down stairs or hills.
“I am slow to talk about it but I don’t want to be ashamed about it anymore and want to spread awareness if I can. If it could lead to a support group in Cork, all the better.”