Hartlepool mum with rare condition reveals her ‘worst nightmare’ - that her children also have it

Amanda Storm, of Hartlepool, who suffers from Charcot-Marie-Tooth disease.
Amanda Storm, of Hartlepool, who suffers from Charcot-Marie-Tooth disease.

A mum is facing her ‘worst nightmare’ as she worries the disease which has blighted her life may have been passed onto her children.

Amanda Storm, from Hartlepool, has Charcot-Marie-Tooth (CMT) disease, which is a group of inherited conditions that affect the peripheral nerves.

Amanda Storm, who suffers from Charcot-Marie-Tooth disease, pictured with her family, from left, sons Lewis (18), and George, (7), daughter Olivia (17) and her mum Elizabeth Wrankmore.

Amanda Storm, who suffers from Charcot-Marie-Tooth disease, pictured with her family, from left, sons Lewis (18), and George, (7), daughter Olivia (17) and her mum Elizabeth Wrankmore.

Amanda, 42, was diagnosed with CMTtype 1 at the age of 19, and believes it has been passed on from her mother’s side of the family.

Although she doesn’t feel nerve pain, she 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, is 20, and 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.

It would be my worst nightmare if my kids had it as well, but you can’t do anything about it

Amanda Storm

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.

The symptoms of CMT can show at any age, and Amanda is hoping her children do not have to go through the same challenges she has had to face.

She 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.

“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.”

This month is CMT Awareness Month, organised by charity CMT UK.

The charity is aware of 3,000 people living with the disease in the UK, but estimates there are 20,000 others who are undiagnosed.

Amanda is hoping more people who show the symptoms of CMT will come forward and receive the treatment they need.

She added: “It’s the most common of this type of disease, but nobody seems to have heard of it.

“Whenever I tell anyone what it’s called, they always presume it’s got something to do with my teeth.

“There could be lots of other people out there who are living with it but haven’t been diagnosed.

“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.”