[Editors note: I’m really happy to say that I have finally found someone willing to do a guest post on their life with Juvenile Arthritis. Lene is an arthritis advocate who has her own blog and she is now also a published author of a book detailing life with arthritis. Lene is a super knowledgeable lady who has been dealing with this terrible disease since she was 4. I am honored to have her as a guest blogger]
[Here is a picture of Lene. It helps you to put a face to the guest blogger]
The first time I felt the pain of juvenile arthritis (JA), I was 4 years old. I remember helping my father paint the living room wall in our new house. I remember the grinding pain in my right wrist afterwards. For years, my JA was limited to one wrist and one ankle, although that makes it sound not too bad. It was pretty bad for a child — there was a lot of hospital stays, a lot of missed school because of fevers and flares and a lot of bullying from schoolmates. When puberty hit, my JA went supersonic. At that time, active JA meant living in hospitals and that’s what I did for the next 4 years. At 14, my hips fused so I couldn’t sit up and I spent the next two years lying in bed waiting for custom-made hip replacement. At 16, I had both hips replaced, got a power wheelchair and went home to live my life.
Juvenile arthritis is an umbrella term for a number of different types of autoimmune diseases that affect children. In autoimmune diseases, the immune system malfunctions and attacks various systems in the body, such as joints, tendons, organs and connective tissue, Juvenile idiopathic arthritis (JIA) is the most common form of JA and was previously known as juvenile rheumatoid arthritis. JIA causes inflammation in for instance the synovial lining of the joints, potentially eroding the tissue. When that happens, deformities and disability may result. The term idiopathic means “of unknown origin” – we don’t know what causes JA, although genetic factors do play a role. Juvenile arthritis affect more girls than boys. Approximately one in 1,000 children has JA. That’s about 12,000 kids in the UK.
It’s important for kids with JA to be diagnosed early so treatment can start. Two types of medications are used for JA: nonsteroidal anti-inflammatory drugs (NSAIDs) and medications that suppress the disease, such as disease modifying antirheumatic drugs (DMARDs) and the Biologics. Currently, methotrexate is the “gold standard” of treatment. Methotrexate is a chemotherapy drug, but when used for JA, is used in much smaller doses than when it is used to treat cancer. The goal of treatment is to stop inflammation to prevent damage and disability. This is why it’s important to take medication — it protects your body against the effects of the disease. Other treatments include physiotherapy, occupational therapy and psychological support. It’s important that children with JA lead as normal a life as possible.
I was a child with JIA during the 1960s and 70s, which makes me older than dirt. It also makes me a living archaeological example (if you will) of what happened before medication. When I was a child, we were treated with aspirin and physiotherapy and that was about it. Occasionally, they tried gold salt treatments, but it worked only for a few. The lack of treatment meant that it was almost inevitable that a child with JA would end up using wheelchair. That hardly happens now.
There are medications now. Actual treatments that work, helping kids with JA go into remission and lead normal lives. Well, very close to normal — you still have to take the meds and pay attention to your treatment so you protect your future. Sometimes, the disease pops up its head again and your life gets sidetracked for a while and some kids don’t respond as well to medications as others. But overall, the reality for kids with JA now is far beyond what it was when I was a child. There is so much hope for the future for children with JA and I can’t wait to see what will be possible!
Lene Andersen is the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain. She is the Community Leader of HealthCentral.com’s rheumatoid arthritis site, the, director of Community Outreach for Show Us Your Hands! and the author of the award-winning blog The Seated View. Her book is available in e-book format on Amazon (US, UK and Canada) and WHSmith. A paperback edition will be forthcoming in the Spring.
[editors note: I would like to thank Lene for sharing her experiences with JA… and I just wanted to add that I will soon be the owner of Lene’s book just as soon as it comes into my local WHSmith]