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'We expected our daughter's MS but it still felt like a bombshell'

11-year-old Lucy Wood taken last September shows her smiling in her new uniform

A photograph of 11-year-old Lucy Wood taken last September shows her smiling in her new uniform, ready for her first day at secondary school. In another photo she is wearing the same smile but is hooked up to a hospital drip as she receives her monthly dose of Tysabri, the drug that controls her multiple sclerosis.

Diagnosed with MS at the age of five, Lucy is one of fewer than 10% of patients who suffer their first symptoms in childhood: most of the 100,000 people with the disease in the UK develop it in their 20s and 30s. She was lucky, however, to receive an early diagnosis. New research from the University of Manchester has found that childhood MS often goes undetected, sometimes for years.

According to lead author Professor Susan Kirk, the delay is due to “low levels of awareness in the general public and doctors about the existence of childhood MS,” as well as there being only “a small group of paediatric neurologists with the necessary expertise to make the diagnosis.”

MS is a progressive, disabling condition in which the body’s immune system attacks the coating around the nerve fibres (myelin), disrupting the transfer of nerve signals and leading to a wide range of symptoms. As with adults, the incidence of childhood MS appears to be linked to genetics, the presence of some viruses, and vitamin D levels, with rates of the disease highest in countries furthest from the equator. While some 125 children under 15 in the UK experience a first MS-like “attack” each year – commonly a problem with vision - only around 20% subsequently develop paediatric MS.

Doctors do not know why an initial attack is followed by further attacks in some children but not in others.

Lucy, from Peterlee in county Durham, was three when she experienced a temporary loss of vision in her left eye. Doctors suspected a rare nervous system disease called ADEM (Acute Disseminated Encephalomyelitis), which can cause similar symptoms to MS and which was successfully treated with steroids. Further problems with Lucy’s vision, balance, coordination and speech followed, but her parents were still told MS was unlikely. This was even though Lucy’s father, Stuart, 46, had been diagnosed with MS aged 27 – and having a parent with MS increases the risk from 1 in 600 to 1 in 50.

“We were told MS was incredibly unusual at Lucy’s age, but to me it was like watching Stuart develop the disease all over again. We became convinced our daughter had it,” says Sharon, 45, Lucy’s mother. An MRI scan in August 2008 confirmed Lucy’s parents’ worst fears.

“We expected it but it still felt like a bombshell,” says Sharon. “Stuart blamed himself, believing he must have passed it on. In the end, Lucy’s positive attitude helped him accept it.” The couple’s other daughter, Katie, 17, shows no signs of MS.

Lucy suffers with fatigue and sometimes needs to use a wheelchair. But the drug Tysabri (the brand name for natalizumab), prescribed four years ago to help dampen the immune system’s attack on myelin, has been “life changing”, says her mother: Lucy enjoys playing Minecraft, listening to One Direction and singing.

Dr Cheryl Hemingway, a consultant paediatric neurologist at Great Ormond Street Hospital, runs one of the largest clinics in the country for children with MS and other rare myelin-attacking disorders. Early diagnosis is crucial, she says, for reducing the accumulation of disability over time and enabling children to “get on with their lives.”

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Story Source: The above story is based on materials provided by TELEGRAPH
Note: Materials may be edited for content and length

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