A mum says the rare nerve disease which has blighted her life has been passed on – to her FOUR children.
Amanda Storm, 42, was diagnosed with Charcot-Marie-Tooth (CMT) disease when she was just 19.
She now fears the disease, which is a group of inherited conditions that affect the peripheral nerves, has been passed on to all of her children.
She also believes it was passed on to her from her mother’s side of the family, as it is a hereditary disease.
Amanda, from Hartlepool, County Durham, said: “It would be my worst nightmare if my kids had it as well, but you can’t do anything about it. You just have to manage it.
“There are no obvious signs of it yet in my children, but it is a worry, and the symptoms can rear their head at any time really.
“You don’t want anything to affect your children, so I do worry about their future, because it holds you back physically and mentally.”
Although she doesn’t feel nerve pain, Amanda does feel pain from the stresses on her joints and feet, which is caused by her gait and foot drop, and she has pain in her hands.
She wears splints to help her walk and keep her balance, and is now fearful her four children may show signs of the slow, progressive disease.
Her eldest daughter, Emily, 20, complains of aching ankles, while her youngest son George Imisson, seven, took longer than usual to start walking, has tight hamstrings and has to wear splints overnight.
He also lacks confidence with balancing and has to do daily stretches, and is awaiting a gait analysis appointment.
Amanda’s other children – Lewis, 18, and Olivia, 17 – are showing no obvious signs of CMT, but do suffer from sciatica and sacroiliitis respectively.
Amanda added: “I feel really anxious going out, because I feel that people look at me and judge the way I walk.
“I wish I could run around in the park and kick a ball with my youngest son, and I felt that way with my other children when they were younger.
“I can’t run, jump or wear heels, and I’ve never felt like I fit in anywhere.”
“I felt like I didn’t fit in at school, and still don’t sometimes when I’m out with my friends and I can’t wear the same type of shoes as they can.
“I still feel a bit embarrassed about it, and I felt that way through my younger years. I’ve always been the clumsy one who can’t wear the pretty heels.”
September is CMT Awareness Month, organised by charity CMT UK, which is currently aware of 3,000 people in the UK living with the disease, and other 20,000 undiagnosed.
Amanda is hoping more people who show the symptoms of CMT will come forward and receive the treatment they need.
She added: “I went to get checked out because I had the symptoms and knew about it because it was in the family.
“Although sometimes you can live by the label when you are diagnosed, the help and treatment you get after diagnosis does help.”
