Kids Get Arthritis, Too: An Interview With Kelly Rouba

Kids Get Arthritis, Too: An Interview With Kelly Rouba

08.15.11 | By Kate Connors

As part of our current emphasis on arthritis awareness - based on our recent release of our Medicines in Development report on musculoskeletal disorders - we sat down recently to speak with Kelly Rouba, who has lived with arthritis for most of her life. Kelly is a member of the Board of Directors and a national spokesperson for the Arthritis National Research Foundation, which gives an annual research grant in her honor, called The Kelly Award for Juvenile Arthritis Research. She is an ambassador for people living with the disease, emphasizing that new treatments and a cure will only be possible through continued research.

For more information on juvenile arthritis, learn how kids get arthritis, too.

When were you first diagnosed with juvenile arthritis?

I was diagnosed in the summer of 1982, when I was two years old. As you can imagine, I don't remember a whole lot about it, but I do remember that I had started limping. From what my mother told me, it came on like the flu - she could tell that I was not feeling well at all. She took me to the pediatrician, who was able to diagnose it pretty quickly and recommended that that I go to a children's hospital in Philadelphia. A lot of children go undiagnosed or misdiagnosed, making it important to know the symptoms so they don't lose time before being treated.

What was it like to grow up with juvenile arthritis?

For many years, I was either bitter or I just chose to ignore it and live my life like everybody else, which isn't necessarily a bad thing. I just wanted to be like my peers and not have to focus on the awful things that come with having arthritis. So, in a sense it was great, but on the other hand, I look back and wish I'd had a support network like the one I do now. I have some amazing friends of all ages with arthritis and I've learned things from them that have enhanced my life - and I like to think that I've done the same for them. If I'm having a bad day and am in a lot of pain, I can talk about it with them. That's why it was really a blessing in college when my attitude shifted and I became more open-minded and embraced my disability, instead of pretending I didn't have one.

How is your health now?

It's better than it was. About two years ago, I developed a tolerance to the biologic that I had been taking, which had been controlling the arthritis pretty well. I reached out to my support network and learned that others had had a similar experience. A few months later, I got on a new biologic drug and eventually things got better again. It was a setback, but that's why I'm glad there are newer and better medicines coming out all of the time, and one of them worked for me. Hopefully, it will continue to do so until something better comes along.

So, if you're on newer medicines now, how has your treatment changed since you were first diagnosed?

When I was first diagnosed when I was really little, the answer was baby aspirin - which I liken to treating cancer with aspirin. It did nothing to stop the disease, so the arthritis took a major toll on my body. I have joint contractures, deformities, and other limitations. That's why I encourage people to get treated as early as possible, because if you let the disease run rampant, it will do a lot of damage.

As I got older, the doctors introduced new medications, but I didn't really notice a difference until I got on a biologic drug in young adulthood. That's when I had, for the first time ever, regained some of the function that I had lost years ago. I could take short steps, I could open doors.

Are you involved at all in research into arthritis that is ongoing?

I always try to keep up to date with research, to know what's the latest and greatest, to not only help me but also to help my friends who are suffering. I was out to dinner with a friend who was recently diagnosed with rheumatoid arthritis and in a very short amount of time she could barely walk. We were talking about a new drug that is in development and a lady at the next table overheard and asked me about it for herself. I have a lot of hope for the future for people like my friend and that lady.

What would you like people to know about living with arthritis?

One of my biggest frustrations is that the public is largely unaware that people of any age can get arthritis and it's typically more severe than most people assume it to be. It'd be nice if we could take an aspirin and go bowling, but for many of us it's not the case. It's really very severe. It's the number one cause of disability, so it would be nice if it got a little more attention and if more people understood.

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