“It spread to my lungs as the inflammation was really high, I couldn’t move, I had to be constantly on morphine.”
Carrie Thompson was paralysed from the neck down from her arthritis. She had to use a wheelchair and be dressed in the morning; she couldn’t even go to the toilet by herself. And she was only 18.
According to Arthritis Research UK’s data over 52,500 under-18s have an on-going problem with arthritis. It can cause stiffness, fatigue, swelling, damage to your eyesight and even paralyse you. Contrary to the belief it’s a natural part of growing old, over a thousand children and young people develop a form of inflammatory arthritis every year.
Rheumatoid arthritis is a long-term condition caused by inflammation in the joints. However, any adolescent diagnosed below the age of 16 will be classified as having J.I.A (Juvenile Idiopathic Arthritis) in which there are several different types of the condition. Both these issues have only recently started to be addressed though; one researcher in particular who helped initiate the surge in development is David Isenberg, the head of rheumatology at University College London…
He’s stood in the laboratory at UCL surrounded by test tubes, microscopes, pipettes and piece of paper scattered around. Reminiscing, he describes a bread shop he loved in North London called Daniels:
“Now Daniels was open on a Sunday morning and one Sunday morning in 1997 I met a guy called Martin Dunitz, a publisher, and he said to me that he would love me to write a book for him. So I got to thinking, what’s a gap in the market? And I thought… arthritis in adolescence.”
Isenberg wrote the book ‘Adolescent Rheumatology‘ and several years later decided to establish a centre to research it. The discovery that “certain molecules are absolutely key to the development of arthritis and therefore the idea you can block these molecules” has been fundamental to the progression of the treatment and the creation of biologic drugs that can target these specific molecules.
After recognising that females are much more prone to certain types of arthritis the most recent theory, David describes, is the idea that hormones have an impact. “In essence we’re looking at what effect hormones, in particular female sex hormones, have on the immune system and on the musculoskeletal system.” This is especially relevant to teenagers who are “in a time of great flux, a transition period.” And what causes hormone levels to fluctuate more than anything else? Exams.
While Isenberg focuses on the effects of arthritis in teenagers, Laura Hanns – a PHD student at the University College London – is looking at the effects on children. Her PHD is investigating “the effects of psychological stress on inflammation in arthritis.” Working alongside David in the laboratory, she flicks off the computer in front of her. She explains that “inflammation is a particular problem for adolescents during GCSE and A-levels and many require an extra steroid injection in the joint to help control the inflammation and get them through their exams.”
Arthritis can also be linked to various other diseases. In Simon Stones case, a 22-year-old Biomedical Sciences student at Manchester, he also had Crohns disease “which is inflammation of the gastrointestinal tract.” People often underestimate the impact arthritis has not only physically, but also psychologically.
“It was just very isolating you know, I missed school, I missed primary school for about 8 weeks. I’ve got a high pain threshold naturally just because I’m constantly in pain every day.”
He’s now working as a consumer representative for children and young people with arthritis. But that’s not an easy job.
Raising money to fund the research is proving to be extremely difficult due to the lack of awareness about the condition. Take it from Sophie Laitner, the major gifts executive for Arthritis Research UK: “People don’t often consider it as a disease that’s important so I think it’s even more important for us to go out and ask people to support it.”
The charity, run by Chief Executive Dr Liam O’Toole, funds research into adult arthritis as well as specifically for adolescence. O’Toole says “Our work on young people is crucial because they tend to get left out, they get lost in the gap between. The Arthritis Research UK Centre for Adolescent Rheumatology is unique in filling this gap.” So how do they fund it?
Every year the charity hosts ‘The Lantern Opera’ to raise money for JIA. Guests are greeted with a champagne reception before dinner and an operatic performance, and last year it made over £54,000. In addition to this they fund the research with contributions by the public, but getting people to part with their money can be tricky. Vicky Evernden, the senior direct marketing officer, thinks “it’s difficult; it’s a hard sell when you’re up against things like cancer.” Evernden explains that the “charity relies on a mixture of smaller donations made by the members of society and larger sums of money donated by companies and individuals.” One donor to the charity, who is now an honorary vice-president, is Sue Arnott.
At 63-years-old she fits the stereotype associated with the condition perfectly. But what you don’t know, is that Sue has had arthritis since she was just 22. Back in the 1970’s treatment was much more limited, and so Sue has had a very different, and much more challenging, experience with her arthritis. “Now to come across someone like me who’s had every major bone in their body replaced is very rare.”
With a family of her own, she stresses how awareness of the condition and raising money for treatment is essential because “if people are unable to work then they become a real burden, on their families, on society, and what does it do to their own psychology, it’s absolutely devastating. That’s the reality, and do you get married? Can you have children? It has a very serious impact on family life.”
Arthritis isn’t just an old persons problem. It can have a huge impact and affects thousands of young people every day. But it can be treated. Take Carrie for instance, who couldn’t even move…
“being in a wheelchair and being paralysed, you lose your sense of independence, but the treatment has given me the ability to walk, and to study, it’s given me my life back.”
Statistics taken from: http://www.arthritisresearchuk.org/