Teenage kicks against arthritis
Reproduced from Issue 103 of Arthritis Today
Seventeen-year-old
Emma Cole looks like any other teenager. But the youngster from the tiny
village of Slaley, near Hexham in Northumberland, has been severely affected
by polyarticular juvenile chronic arthritis since the age of six.
With the help of her devoted mum Helen Inglis, Emma is determined to lead as normal a life as possible, but inevitably, the crippling disease has not only restricted her mobility, but also, and more seriously, her career aspirations.
She has had to accept that her badly affected joints – including feet, ankles, wrist and fingers – make it impossible for her to physically cope with working with horses – something she had set her heart on doing.
Now she has embarked on another option; she has just started a course in beauty therapy at college in Newcastle, a bus journey away from her home where she lives with her mum and young sister Alice. But despite her upbeat attitude to her arthritis, Emma is not sure whether or not her condition will allow her to hold down a career as a beauty therapist, and she and her mum simply have to take each day as it comes.
Helen Inglis, who brought her daughter up alone, is very aware of Emma's desire to be independent, but at the same time, is understandably also very protective of her. The teenager had to cope with being bullied at school, and Mrs Inglis had to fight to get the help and support she not only needed, but was entitled to.
"There is a great lack of information and help on offer with youngsters with JCA and their parents," she told Arthritis Today. "At school they all knew she had arthritis, but no-one ever offered her any aids, such as a laptop computer. I had to fight to get her one so that she could take her exams. And we were never told about what entitlements we could get such as disability benefits and mobility allowances (Emma now gets the basic disability living allowance). I'm very bitter and angry about that."
While Mrs Inglis has nothing but praise for Emma's rheumatologist Dr Helen Foster, who runs the rheumatology youth clinic in Newcastle, and who offers as much support to her young patients as she can, she believes that there is simply a need for more information to be available for JCA sufferers and their families.
"It's no good just putting up leaflets in doctors' or hospital waiting rooms, they need to be given to them; parents are so distraught and upset about their child having JCA, they need information about benefits, and where to go to for help."
Even with her mother rooting for her one hundred per cent, Emma's life is not easy, nor it is likely to get any easier. Although she is on methotrexate, it is not particularly effective in damping down the many flare-ups she goes through. Neither steroids, hydrotherapy, splints, and numerous homeopathic remedies have had much benefit.
She may need several joints replacing in the future, and is often tired and in pain. Little things like opening jar, lifting pans, and taking the tops off juice bottles are a struggle.
"It's hard for Emma, harder now than when she was a child," says her mother. "She wants to be independent, but unless she has some sort of mobility she will never be able to be. She tries to have a normal life and keep up, she wants to hang out and go to dances like everyone else.
"Because she has lived with arthritis probably as long as she can remember, it's part of her life, and she doesn't complain and ask: 'why me?' It's me who does that."
Arthritis and adolescence – room for improvement.
It's teenagers like Emma Cole who have prompted arc to make arthritis and adolescence the theme of Education Week (January 4–10).
The aim is to draw the public's attention to the 14,5000 children and young people with juvenile chronic arthritis, in particular the rather special needs of teenagers. Sticking to rigorous medication, undergoing regular physiotherapy and wearing cumbersome splints are the last things style-conscious youngsters want to think about when all their friends are going out enjoying themselves, and often they rebel against the restraints their arthritis places them under.
arc is drawing attention to two major issues. The first is the need for more specialist rheumatology clinics in the UK which can deal with teenage patients' complex medical, social and emotional needs. There are currently only seven in England, with an eighth being set up, and one in Scotland.
The second is the discrimination faced by youngsters with arthritis when they try to find work. Although they gain as many academic qualifications as able-bodied teenagers, their unemployment rate is up to three times higher.
Emma Cole – just one teenager set to benefit
Dr Helen Foster, a paediatric rheumatologist who runs a young adult clinic in Newcastle for the over 16s, and has just set up a teens clinic for the over 13s, believes teenagers can benefit enormously from dedicated clinics which are more geared up to their particular needs.
They encourage more responsibility, and the development of confidence and assertiveness, and allow the doctor to explore the adolescent's feelings and concerns, separate from their parents. Patient education and involvement in decision-making have been identified as two of the most important ways of significantly enhancing young people's quality of life, leading to reduced pain and depression, according to recent studies.
"It can be really hard for an adolescent to cope with having arthritis; it's worse than in a child," said Dr Foster. "They see all their friends going out and partying, and they are having to take medication, wear splints and rely on their parents for getting around; it's hard for them to be independent and do all the usual things that teenagers do. They are desperate not to be different."
A study of youngsters with arthritis in London found that the employment rate among patients aged 16 and over was three times higher than the national rate. A similar study in Newcastle revealed unemployment to be twice as common in teenagers with arthritis, than others.
"Our research has shown that adolescents with arthritis get negative careers advice," said Dr Foster. "They should be given more positive encouragement. I want to stress that they can have a normal life, and they should aspire to a career like everyone else."
Apart from generalised, widespread discrimination towards the disabled, Dr Foster believes patients' own low expectations of their achievements – and possibly those of their parents – was a strong factor. "Youngsters with arthritis need positive, high achieving role models, and careers advice needs to be much better and given earlier than it is currently," she said.
More research to explain the discrepancy between employment figures and levels of educational achievement was needed, she added.
arc has submitted a bid to the National Lotteries Charities Board on behalf of a team which include Professor Tauny Southwood at the University of Birmingham for a three year, £200,000 project, which aims to improve the quality of life of adolescents with juvenile chronic arthritis. If the project wins lottery funding, a special advisory board will, after wide consultation, draw up a transitional programme for care, which will be implemented throughout many centres in the UK by local co-ordinators. The programme would address issues such as education on health care including alcohol, sex, illicit drug use and diet, independent living, and further education. A decision will be made by the lottery board in the spring. |
