Watch Caitlin’s video of her experiences with hip replacement.
Ask Caitlin Ryan to name her favorite subject in school and she doesn’t hesitate – it’s dance.
“Right now we are doing hip hop. We’ve done world dance and ballet,” Caitlin says. “It’s amazing because I’ve never been able to really dance like there’s nothing wrong.”
Caitlin may be forgiven if dancing shoes hold more appeal than schoolbooks this year. Because while her classmates spent their summer vacations going to the swimming pool and the beach, Caitlin, age 11, was undergoing hip replacement surgery.
Caitlin is one of an estimated 300,000 children in the U.S. who have juvenile arthritis, or JA. At age 3, she was diagnosed with juvenile rheumatoid arthritis, or JRA, the most common form of arthritis among children. This autoimmune disease, which affects an estimated 50,000 children, causes the body to attack its own joints and organs. The symptoms ebb and flare, often without warning or explanation. Additionally, it dramatically affects physical mobility and may lead to blindness.
“When they first said it was arthritis I was a little bit relieved it wasn’t cancer,” says Caitlin’s mother, Colleen Ryan. “But the more I learned about it, the more devastating the diagnosis became because her [case] is one of the most severe. She has it in every joint.”
It’s not known what causes the condition, and there is no known cure. It goes into remission for some children but lasts into adulthood for many more.
Caitlin’s rheumatologist, Andreas Reiff, MD, Associate Professor of Clinical Rheumatology at the Children’s Hospital Los Angeles, says 80 to 85 percent of JRA patients respond well to medication and find relief.
Dr. Reiff says these newer medications are so effective that the number of joint replacement surgeries his hospital has performed on pediatric patients has dropped dramatically. Since 2000, Children’s Hospital Los Angeles has only done eight to 10 joint replacement surgeries compared with the 15 to 18 the hospital did yearly until 1999.
That’s good news, because joint replacement poses special challenges for younger patients.
Their bones are smaller, so it’s often difficult for doctors to find replacement parts that are the right size. Components sometimes have to be custom designed and built for children.
Additionally, replacement joints wear out over time, meaning that most who have their joints replaced at young ages will likely need a second or even third surgery later in life. For each subsequent surgery, less of the patient’s natural bone remains, making it an increasingly difficult and complicated procedure.
What’s more, replacing joints destroys the growth plates in bones, which stalls a child’s development and sometimes limits height.
Despite all these problems, experts say there are still cases, like Caitlin’s, when joint replacement remains the only option.
Your story is compelling. You are a brave young lady! My daughter, Sara, is 13 and also diagnosed at 3. She has tried all kinds of medicines and has been in and out of remission. Unfortunately, she lives with hip pain everyday and is now a candidate for a hip replacement surgery.
We live in New York and are considering Hospital of Special Surgery where you had yours done. We are not sure what to do and I would love to hear from you or your mom, Colleen.
Please contact me at my email lorenza101@aol.com.
I can also put you in contact with my daughter, I'm sure she would also love to hear from you.
Thank you, Lorenza
STAY STRONG AND POSITIVE!!
I was also diagnosed at age 33 and I'm now 45. I had my first hip replacrment when I was 15 and 1 week later they replaced my other hip,I also had both my knees put in traction 3 pins in each leg where the Dr's tried stretching out my knees before replacing then but I had no success with it. So when I was 17 I had them finally replaced. There have been 10 additional, revisions of both my hips and now I plan on having both my kees revised again in another 2 year because I just had both my hips revised last year, January of 09 and September of 09 and I ran into some problems with the left hip and needed blood transfusions. And now I'm married with 2 young adult daughters, I was told by my Rheumatologist I probably wouldn't be able to carry a baby but I did with no problems.
My advise to you and anyone else is to stay active and make sure you always exercise but also try not to overdue any activities because the hip and knee replacement can get loose. My knees have lasted 37 years and my hips about 25 years ago and then again in 2009 for both hips, so please be very conscience of your new hip replacement and stay healthy and strong but still have fun.
HANG IN THERE, GIRL!!!
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