I won't let this awful illness get me down

Alison Laird says she has gone from being a fit young woman to someone who struggles to walk properly or even lift her five-year-old grandson.

Determined to help find a cure and fund research into GNE myopathy, she is holding a sold-out fundraising night at the Lithuanian Club this Friday.

Alison (42), of Pollock Street, said: “I had symptoms for many years before I was finally diagnosed. My GP and the health professionals I came into contact with hadn’t heard of my condition, which is why I feel I must do everything I can to raise awareness. There must be other people undiagnosed or even misdiagnosed.”

Alison has always been very active and even worked in the fitness industry. She explained: “Gradually I began having some unusual physical symptoms. I was occasionally falling and tripping in my late 20s, which could be dismissed as clumsiness at first.

“In my early 30s I noticed my feet did not have the range of movement I once had. I was baffled by these symptoms as I knew I was in good physical condition. I started lifting weights but then noticed my weights had to be lighter as my strength was decreasing.”

After seeing her GP and a physiotherapist, Alison was referred to a neurologist and genetic testing finally confirmed her condition.

She said: “I was devastated to realise my life would change so much. I can’t run at all anymore, my walking is slow, I wear leg braces and I use a walker at times.

“I can’t manage stairs very well and my upper body strength is poor. I can’t lift my gorgeous grandson in my arms. I had a terrible fall recently which landed me in hospital.

“However, there is so much going on to find a cure for this condition. I need to help people like me to stay active, positive and have a fulfilling life.”