Charcot-Marie-Tooth disorder: I grew up being told I was lazy and useless

ROSE Brewis was an adult before she discovered she had progressive muscle-wasting disease CMT which affects thousands in the UK.

As Rose Brewis grew up she became accustomed to the taunts and jeers of her classmates who branded her “lazy” and “useless”.
Throughout her childhood, Rose, 31, who was born in New Zealand but now lives on the Isle of Man, found school exhausting and struggled with any type of physical activity.
Her hands and feet were deformed, she struggled to write, held pens awkwardly and her hands and arms ached with the effort it took to hold a pen.
“I don’t have great memories of school,” she recalls.
“Sports day became the most dreaded day of the school year for me. I came last in everything, my legs would go numb and I would constantly be falling. I would end up being laughed at and bullied.
“I was called lazy and useless and that I needed to just try harder, despite me always trying my best.”

By the age of 15 the bullying had become so bad that Rose dropped out of school.
She was unable to complete a hairdressing apprenticeship because she couldn’t cope with the demands of standing all day.
“I was constantly unwell and would get sick easily as my body was so run down,” she says.
But it wasn’t until Rose was 28 that the mystery was finally unravelled.
After marrying at 19 and moving to the UK, Rose had two children; Liam, now eight and Olivia, six, both of whom were born prematurely.
“I could tell something was wrong with Liam by the time he was six months old,” she says.

“He couldn’t walk at 18 months although he could stand.”
At two-and-a-half Liam was diagnosed with hip dysplasia and had an operation in which his legs were broken and reset.
He spent two months in a cast from which he never fully recovered.
Luckily for the family, a paediatrician sent him for tests and he was diagnosed with the neurological disorder Charcot-Marie-Tooth (CMT).
The genetic progressive condition causes muscle weakness, uncontrollable pain, chronic fatigue and deformities in the lower legs and feet, leading to balance problems and falls.
The hands and fingers are also affected, making tasks needing fine motor skills, such as fastening shoelaces, difficult.

It is estimated that about 23,000 people in the UK have CMT, which is named after the three scientists who discovered it, but many are unaware they have the condition.
Although CMT is not life-threatening, for many it can significantly reduce the quality of their lives, with some even ending up wheelchair bound.
Leading consultant neurologist Professor Mary Reilly, of the MRC Centre for Neuromuscular Diseases and an expert in CMT, says: “CMT has many different characteristics but commonly there is a loss of muscle and touch sensation, predominantly in the feet and legs but also in the hands and arms in the advanced stages.
“These lead to a range of orthopaedic complications, leading to a variety of mobility and dexterity problems and sometimes scoliosis.”
She adds: “It is important to determine exactly what kind of CMT someone has in order to improve their quality of life and this can only be done once a diagnosis is considered in a patient.
“Many people put up with CMT for a long time thinking they are clumsy or have funny feet, suffering in silence when they could be receiving help.”

Karen Butcher of the charity CMT UK says: “Sometimes the symptoms aren’t so obvious but due to the fact that CMT affects the hands and feet, it could be they have trouble balancing, find they regularly trip or fall over and are constantly tired.”
Early diagnosis can improve the lives of those with the condition as it can be managed more effectively.
Because CMT is genetic there’s a 50 per cent chance it can be passed on from a parent to a child.
Tests showed that both Rose and Olivia had the condition.
“It was the biggest relief I could ever imagine, a simple piece of paper telling me my symptoms had a name and I was suddenly normal,” says Rose, who also suffers from hyper-mobility and arthritis.

“At the same time, though, I was angry at my dad for having made out I was useless and lazy all my life.”
She adds: “I’m relieved my children don’t have to go through what I went through. They have amazing school support and teachers who want to help them thrive. They are looked after brilliantly.”
September is Charcot-Marie-Tooth awareness month.
To find out more about the condition visit cmt.org.uk or call 0800 6526316.
You can donate by visiting justgiving.com/CMT

 
 
Published originally on http://www.express.co.uk/life-style/health/856043/cmt-charcot-marie-tooth-disorder-progressive-muscle-wasting  on 19/9/2017