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.
What's the hardest part about being a teen with JRA?
I never wanted to be thought of as "different" than my peers, yet I was. No one was ever really mean to me about the fact I have arthritis, but I often felt left out. It is difficult emotionally to be excluded or to have to sit on the sidelines when everyone else is having fun. A number of teens I interviewed for my book or have met over the years feel the same way. Sadly, a few of them have even been made fun of because they have arthritis.
What's been your most positive experience with the disease?
I think having arthritis made me mature quicker, and it also opened the door for me becoming an advocate for myself and others. One accomplishment I am most proud of is my work with the Arthritis National Research Foundation, which led to them naming a juvenile arthritis research grant after me (The Kelly Award). This year, the $75,000 award went to a researcher who would not have been able to continue her amazing work without the grant. I got chills when she told me that, and I am so happy I had a hand in helping her. Hopefully her work will eventually help many others.
What's the most helpful or thoughtful thing anyone has said to you about growing up and dealing with a chronic disease?
For the most part, my parents have always encouraged me to pursue my dreams and not let my disability stop me. I've also learned to be creative in terms of figuring out how to accomplish my goals.
If there's one thing you'd want everyone to understand about JRA/JIA, what would it be?
Many commercials tend to minimize the severity of arthritis. Despite what commercials show, managing the disease isn't always as simple as taking an aspirin. Arthritis can be very painful and damaging, which is what I endure every day.
What inspired you to write the book?
I was approached by Scarecrow Press and asked to write the book. I agreed to do it because I knew the resources that were out there at the time were mostly outdated or geared towards parents-not teens or children themselves.
What age groups do you hope will read the book and what is a good way of using it?
It's part of a series for teens called It Happened to Me, but I tried to write it for a broader audience because so little is out there in the way of guides and resources. Also, it's something teens can read with their parents and I already know a few who have.
What's the main difference between getting JRA when you first got it JRA/JIA almost 30 years ago and now?
The medication available now (namely biologic drugs) has come a long way in controlling the disease and preventing damage. However, we are now finding that many people are becoming tolerant of these drugs (myself included) and then flare up again. So, that's why I work hard to raise funds for research in hopes that better treatments or a cure will be available sooner than later.
Please tell us about your work with Arthritis National Research Foundation.
I serve on their Board of Directors and am a national spokesperson for ANRF. My neighbor Bill Scannon and I also were the inspiration behind their Marathon for a Cure program. I work every day to help spread the word about their mission. I have also organized a few fundraisers for them.
What are three things every child, teen and young adult with JRA/RA should know?
- You will face challenges in life, but learn to find creative ways to overcome them.
- Develop a support network to give you advice when needed.
- Learn as much as you can about the disease and the latest and greatest treatments, so you can make informed decisions on how to best manage your health. And it's okay to get second opinions when it comes to your health
Kelly Rouba is currently working in the field of emergency management, making emergency planning more inclusive of people with disabilities, writing a children's book about disabilities, taking part in Waking Up (req. Facebook registration), a documentary about JIA and about to move into her own house in New Jersey.
You can read more of Lene Andersen's writing on The Seated View.