Arthritis National Research Foundation –
As Juvenile Arthritis Awareness Month comes to a close we would like to introduce you to another young lady with juvenile arthritis, Kaitlyn. At the Arthritis National Research Foundation we will continue to highlight these inspirational young children throughout the year to raise awareness that kids get arthritis, too. To have your story featured please contact Marketing Director, Derek Belisle at [email protected].
Kaitlyn, age 8, was diagnosed with juvenile rheumatoid arthritis at age 2. At her last appointment with her rheumatologist in May she was in remission, but her uveitis is still active. She is fighting for her eyesight, trying to control the pressure and glaucoma from progressing further in her left eye. Her battle with juvenile rheumatoid arthritis has been tough, but as you will see from the interview below, with her mother, Tahana, Kaitlyn has the never give up spirit that serves to inspire us all.
Help end the suffering that these kids go through by making a donation to support juvenile arthritis research.
What treatment protocol has Kaitlyn undergone and what has been most effective for him/her? Shes is currently taking methotrexate (injection), humira (injection), isotope homatropine (eye-drop) travatan (eye-drop), brimonidine (eyedrops), dorzolamide (eye-drops). Kaitlyn has undergone cataract surgery in both eyes and eye muscle surgery in her left eye. Kaitlyn currently wears contact lenses with bifocal glasses and then at night time I take out her contacts and she has a thicker pair of bifocal glasses she wears without her contacts. Travatan (eye-drop) is the last resort to keep her eye pressure down or she will have to have surgery on her left eye.
What has juvenile rheumatoid arthritis meant to your lives?Our lives have changed and Kaitlyn’s life has definitely been difficult. Her father and I hate giving her injections every week. We want nothing more than for her to have a normal childhood and not have to worry about kids picking on her because of her disease. If I could take her place, in a heartbeat I would. We have to see a uveitis specialist and a glaucoma specialist. In addition we have to travel 3 hrs to Indianapolis for her to see pediatric rheumatologist and ophthalmology doctors. Our lives revolve around trying to ensure she feels better.
What are some of the challenges you face as a family in dealing with JRA? Because of Kaitlyn’s arthritis we have to worry about her getting sick or being around other kids who are sick. We never know what each day will be like for her. Another problem is that we’ve had to deal with kids picking on her in school. Some days she is limited to what she can do and the other kids call her slow or they tell her she is faking it so she won’t have to participate in activities. They tell her she has big eyes due to her wearing bifocals and they call her a nerd. If this disease was not already hard enough for her, she must deal with her peers as well. This is one of many reasons why we are so passionate about raising arthritis awareness.
What are some of the challenges she faces as a kid dealing with JRA? Kaitlyn feels like she’s different and she tells us all the time she just wants to be normal. I don’t think she quite understands what’s going on and why she has to take all these medications. She always tells us it’s the doctors fault for not catching the uveitis sooner or she once asked us if she was to be born again would she still have this disease. It breaks my heart that I cannot do more for her.
Has juvenile rheumatoid arthritis impacted the type of activities she can do? The activities you can do as a family? JRA has definitely limited the kinds of activities Kaitlyn can do. She was in ballet for awhile, but couldn’t do some of the moves so we had to take her out. Currently she is in martial arts and she seems to be doing pretty well, but she does have her days where she is in pain. This causes her to school and her activities. There are days where she feels well enough to go outside and play. However, later at night we have to wrap her knee or ankle depending on where it hurts because the activity has caused her pain.
At the Arthritis National Research Foundation we feel research is the key to finding new treatments and a cure. This is why we focus our efforts strictly on funding cutting-edge research. How do you feel about the research underway and what would you like to see happen? I would love for the Arthritis National Research Foundation and the arthritis research community to find a cure for JRA. A cure would mean that these little kids don’t have to be in pain or take all these medications just to have a normal day.
Do you have a message you’d like to convey to others suffering with juvenile rheumatoid arthritis or other arthritic diseases? Just to keep on fighting and be strong cause one day we will find a cure.
We share Tahana sentiments. One day we will find a cure for juvenile arthritis and the other arthritic conditions. The determination and inspiration provided by all of you will help us get there. Make a difference in the fight against arthritis by making a donation or learning how you can get involved to help raise awareness.