Simple tasks can be tough for the Lee sisters, who have juvenile arthritis
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| ROY SYKES PHOTO -- Patrick Lee, his wife, Lee Peal-Lee, and daughters Rachel and Amanda regularly participate in events and fundraisers for the national Arthritis Foundation. Rachel, 9, was diagnosed with juvenile rheumatoid arthritis when she was 3, and Amanda, 11, was diagnosed with it this year. |
You would never know 9-year-old Rachel, when just a toddler, battled morning stiffness, crying and complaining that she couldn't get out of bed.
You would never think Amanda, now 11, had to sit out of P.E. class for the second half of the past school year.You would never envision the simplest tasks, such as getting out of the car and walking inside a store, are sometimes so difficult for the girls that their parents just have to drive home.
And if you did know, you would never expect the family's attitude.
"It may be a negative in life, but we're making it a positive," said mother Lee Peal-Lee. "They're not going to let it get them down."
Lee is referring to juvenile rheumatoid arthritis, the disease her family has battled for years. At age 3, Rachel was diagnosed with polyarticular arthritis, meaning five or more of her joints typically are affected. This year Amanda discovered she has pauciarticular arthritis, which typically affects four or fewer joints. Rachel has been treated with a chemotherapy drug and now takes injections twice a week. Both girls deal with regular pain, which prevents them from performing some day-to-day activities.
About 300,000 children under 18 suffer from juvenile arthritis, according to the Arthritis Foundation, a national nonprofit organization. Out of that number, about 50,000 children in the U.S. suffer from JRA. The autoimmune disease keeps the immune system from stopping the infection-fighting process, inevitably damaging the body, rather than protecting it.
To put it in perspective, said Arthritis Foundation Spokesperson Stephanie Stangl, juvenile arthritis is more prevalent than cerebral palsy and juvenile diabetes combined, and JRA is one of the most common childhood diseases in the nation.
And, while rheumatoid arthritis usually is not associated with children, it is almost unheard of to see it in two young siblings.
"When (Lee) told me Amanda had it, too, I was like, 'Are you kidding me?' We rarely hear that," said Stangl, who also is a close friend of the family.
Both girls have come far, Lee said last week inside their Wentzville home, but it still has been a long road, particularly because the disease is so difficult to diagnose.
Rachel's symptoms began when she was about 2 1/2 years old. She wanted to be carried everywhere. She had trouble turning doorknobs and walking down stairs because of intense pain. She was always in the fetal position. Her knees began to swell because of inflammation.
But for the longest time, Lee and her husband, Pat, simply thought their youngest daughter wanted to be babied. Eventually, Lee said, a doctor noted during a regular checkup that Rachel was walking "wobbly," with her toes pointed inward. She was diagnosed with JRA shortly after.
"I was just floored," Lee said. "I just couldn't imagine."
Several medicines followed, including methotrexate, a chemotherapy drug. Rachel fought taking the pill each week, and was so anxious she would get sick before she even swallowed it. About eight months after being diagnosed, she began taking an injection that proved to be her miracle drug. She has her ups and downs, Lee said, but the family has seen a tremendous change.
Amanda began showing symptoms at age 10, but her family thought they were related to an ankle injury she suffered while coming down the stairs. By December, her left ankle continued to swell, and a walking cast given to her a few weeks later also failed to help. Amanda eventually was sent to a rheumatologist after an MRI showed inflammation. Her diagnosis was equally as upsetting, Lee said.
Both girls say they have adjusted well. Rachel has told some close friends about her disease, and they sometimes sit out of P.E. class with her so she doesn't get lonely. Amanda said she was a little scared at first, but Rachel helped to encourage her. They offer this advice: If it doesn't hurt that bad, try not to think about it. Also, try to run, even if it hurts or you don't want to.
Stangl indicated Amanda and Rachel were lucky; she has talked to several children who already are in wheelchairs. And if people need to know one thing, Lee said, they should understand just that; JRA affects about every aspect of a child's life. It's a life-altering disease with many social and academic challenges, and no cure.
In the meantime, Amanda, Rachel and their parents say they will continue supporting each other and spreading the word.
"God may have given this to them, but it was for a purpose - to help other kids and bring awareness," Lee said. "It's making them strong."
July is Juvenile Arthritis Month
Did you know:
> Nearly 300,000 children under 18 are affected by pediatric arthritis and rheumatologic conditions.
> Care visits for these patients averaged 827,000 annually.
> Juvenile arthritis is one of the most common childhood diseases in the U.S.
> Arthritis and related conditions, such as juvenile arthritis, cost the U.S. economy nearly $128 billion per year in medical care and indirect expenses.
> The cause of most forms of juvenile arthritis is unknown, but it is not contagious and there is no evidence that foods, toxins, allergies or vitamin deficiencies play a role.
> There is no single test to diagnose juvenile arthritis. A diagnosis is based on a complete medical history and careful medical examination. Evaluation by a specialist "? either a pediatric rheumatologist or arheumatologist "? is often required.
Common symptoms of juvenile arthritis
> Pain, swelling, tenderness and stiffness of joints, causing limited range of motion.
> Joint contracture, which results from holding a painful joint in a flexed position for an extended period.
> Damage to joint cartilage and bone leading to joint deformity and impaired use of the joint.
> Altered growth of bone and joints leading to short stature.
Source: Arthritis Foundation
For more information, visit www.arthritis.org or call the Arthritis Foundation Eastern Missouri Chapter at 314-991-9333.
