SARAH CORNISH was just 24 when she was diagnosed with the disabling disease multiple sclerosis.
Although more than a decade later she is now a wheelchair user she is determined to live as normal life as possible.
Unusually, she has a full-time job and is the parent of two young children. Sarah and her husband, Jason, say their family is a rarity as most early-onset MS sufferers don’t have children at all.
Sarah considers herself to be fortunate in many ways, not least because she knew what she was up against right from the start.
Getting a diagnosis meant, she says: “I could put a name to why I was not able to do something.
“I was lucky compared to other people who have it, because they have issues for 10 or 15 years before they get diagnosed.”
The Multiple Sclerosis Society, which has its diamond jubilee this year, says it’s not uncommon for sufferers to go undiagnosed altogether.
According to the society’s Huddersfield and Kirklees lead support volunteer, Jill Boothroyd, this area has up to 500 diagnosed MS patients but many more hidden sufferers.
“There are always a lot of people rumbling along who don’t know what’s wrong with them,” she said. “Because the symptoms are so varied it can be difficult to get a diagnosis.”
Sarah, 35, has a slowly deteriorating form of MS. It began when one of her eyes, in her words, “went central.” The problem corrected itself but then she starting experiencing numbness in her legs. A week of hospital tests revealed she had MS.
She and Jason have taken a robust approach to the disease and Sarah is still working full time as a forecasting and planning analyst for an insurance company – an appointment that she took up in 2006, five years after diagnosis.
MS Society figures show that four years after diagnosis only 40% of its members remain in any kind of employment. In fact, Sarah is the major breadwinner in the family at the moment as Jason has decided to become a full time carer for their children, seven-year-old Ellie and three-year-old Austin.
Although MS doesn’t affect fertility or childbirth it tends to strike during the childbearing years and, understandably, makes parenthood a daunting and difficult proposition.
In the past sufferers were told not to have children. Today they are warned of the potential problems.
“The majority of sufferers don’t have children,” said Jason. “We are really rare. It was a big decision for us but we always knew we wanted to have a family.”
Sarah and Jason, who live in Golcar, first met 10 years ago and by the time they started dating Sarah knew that she had MS.
“I gave Jason the chance to walk away,” she said.
“But I was fine with it,” he explained. “My grandmother tried to advise me to leave Sarah and said we’d never have children. I think her attitude was that of an older person. She has since apologised for what she said, many, many times.”
At the time the couple met they were both working in Leeds. Sarah, originally from Crawley, is a mathematics graduate and went into IT work. She has a special motorised wheelchair at her current employer’s offices in Huddersfield, which she calls her ‘desk’, but can also work from home if she needs to.
MS is essentially a disease in which the protective covering of the body’s nerve fibres gradually erodes, causing loss of mobility, pain, fatigue and a myriad other symptoms. Jason likens it to stripping the plastic coating off an electrical wire, with the inevitable disastrous consequences.
There is, as yet, no cure and no definitive treatment. Sufferers are given a wide variety of drugs dependent on symptoms. Sarah had steroid treatment in the early years post-diagnosis, which gave the couple the chance to have a few normal years together, but these can’t be used long term.
During her two pregnancies Sarah’s condition, typically, improved quite dramatically. But after having Ellie she began to walk with sticks and since Austin was born she has had to use a wheelchair.
The MS Society says that childbirth doesn’t necessarily worsen MS symptoms but appears to because during pregnancy women generally feel so well.
Back in the 1950s when the MS Society was formed, sufferers were told to abandon hopes of having a family.
Sarah herself knows of a family friend who was told this and yet lived into her early 70s with the care of her husband.
“It was a terrible shame,” she said. “I’d not say to anyone that they shouldn’t have children. I’m glad we did.”
Sarah has since taken the decision not to have further drug treatments which can have side effects and aims to control symptoms through diet and supplements.
She has also started a course of hyperbaric oxygen chamber treatments at the MS Therapy Centre in Leeds.
Family life for the Cornishes is clearly affected by Sarah’s MS but they have learned to work around her condition and have a lot of help from Sarah’s parents, Iris and Alan Worth, who moved to Huddersfield from Crawley in 2008 in order to support them.
The family has annual holidays abroad and they have a static caravan on the East coast which has been specially adapted for a wheelchair user.
And there is clearly a strong bond between Sarah and Jason.
“Jason eggs me on to do things,” said Sarah. “I dread to think how I would be without him.”
For her birthday last summer, for example, Jason booked a parascending session for his wife on the shores of Lake Garda in Italy, an activity that many able-bodied people would shy away from.
They both feel that there is a positive side to having a parent with a disability.
“The children are very helpful,” said Jason. “I think they have got much more caring natures because it is a part of their lives. But they do get rewarded and I take them away on my own from time to time to treat them and give Sarah some respite.”
There is another, extremely important, aspect to the family’s life that gives them comfort and support.
They are members of the Huddersfield Christian Fellowship.
Jason says it is a ‘network of people who help each other.’
“Even though we’ve got our problems we’re still there to help others with theirs,” he said. “You don’t have to worry about your own problem.”
They are also active members of the Huddersfield MS Society, which is celebrating its 55th anniversary this year.
The MS Society was founded in 1953 by Richard Cave in Chelsea, London. His wife Mary was an MS sufferer and he realised that there was little in the way of support or treatments for patients at the time.
Today the society has 38,000 members and a national register of 10,000 sufferers, although it is thought that as many as 100,000 people in the UK have the condition. The organisation has raised millions for research.
MS is probably caused by a combination of genetic and environmental factors. There is only a 2% chance of inheriting it. Twice as many women suffer from MS as men and it’s virtually unheard of among people living in Equatorial regions.
MS symptoms occur because the myelin sheath around nerve fibres becomes damaged, causing a range of neurological problems. Every sufferer experiences different symptoms, which makes it difficult to diagnose.
The Huddersfield and Kirklees branch of the society has two new activities, open to anyone with MS or a neurological condition. The Young Persons Group meets at the High Park pub in Bradley on the second Thursday in the month at 7.30pm. Chair Yoga, a safe exercise session, takes place every Wednesday morning from 10.30am at Cathedral House in Huddersfield.