In the US, 300,000 children and teens live with Juvenile Idiopathic Arthritis or JIA (previously known as Juvenile Rheumatoid Arthritis), but most of the resources about the disease is geared towards parents. Until last year, when Juvenile Arthritis: The Ultimate Teen Guide (It Happened to Me) by Kelly Rouba was published.
Juvenile Arthritis: the Ultimate Teen Guide gives you an in-depth orientation to JIA and what you can do to live well with the disease. The book includes chapters on what JIA is, treatment options from medication to surgery, how to manage physical and mental health, the benefits of exercise and a balanced diet, negotiating the medical system and adjusting at school, including alternatives to help teens manage their course load and the legal right to receive assistance in education. But best of all, the book is written directly to teens, in a language that's easy to understand, yet does not speak down to the reader.
Feeling isolated and alone are common when you live with JIA and rheumatoid arthritis and finding other people who share your experience can be very helpful. This book includes stories of real-life teens with JIA in every chapter, illustrating points and serving as a sort of support group between the covers of a book. The teens we meet range from those that are doing very well to those whose disease is flaring and significantly affecting their life. As they share their lives with the reader, including their thoughts and feelings and what they do to adapt to life with JIA, there's an overwhelming feeling of it's not just me.
Juvenile Arthritis: the Ultimate Teen Guide is a terrific resource that you can use to learn about your disease and how to live with it. And thanks to the stories of teens just like you, it makes you realize just how normal it is to feel frustrated, sad, angry, hopeful, happy and every feeling in between. And that's a blessing.
I spoke to Kelly Rouba as she was preparing to celebrate her 30th birthday with a benefit for the Arthritis National Research Foundation.
When were you diagnosed with JRA? What joints were affected at first? What kinds of treatements have you tried?
I was diagnosed at the age of 2 in the summer of 1982. I first got sick with flu-like symptoms and then began limping. The disease eventually progressed to every joint in my body.
When I was first diagnosed, doctors had me take a lot of baby aspirin each day. Eventually, I began taking stronger drugs, like naprosyn and prednisone. I have taken many different drugs over the years, from Enbrel to Celebrex. Currently, I am on Simponi, methotrexate, Arava, folic acid, prednisone, tramadol, and methimazole (for my thyroid condition). I also take daily vitamins and sometimes fish oil.
How does JRA affect your everyday life?
My range of motion and mobility is substantially limited due to joint contractures, deformities, and stiffness, so I often require help with daily living activities. For instance, I cannot put on socks or wash my hair. I also use a wheelchair and a walker to get around. On good days, I can walk a few steps, but that's about it. In addition, I rely on adaptive equipment and tools, which ranges from a reacher/grabber to my modified van.