Kids have arthritis, too
Published 12:00 am Friday, March 17, 2006
When you picture someone who is battling arthritis, what image do you see? Is it someone with gray hair and wrinkles?
That's only part of the picture.
Some who suffer the most from this chronic and painful illness are a long way from senior citizen status.
Tyler Raybon, a student at Greenville Middle School, can't really remember when he didn't hurt. Pain has become his constant companion, “like needles poking in my bones.”
Activities that are easy for most children his age – running up his front steps, playing ball, jotting down notes in class – are a challenge, if not an outright impossibility.
“Tyler handles it as well as he does because he really doesn't know anything different,” the fourteen-year-old's step mom, Donna Raybon, says.
Tyler, a soft-spoken, bespectacled young man with a shy, sweet smile, doesn't always tell his parents how much pain he is in.
He says it hurts his heart to talk about it.
A mysterious illness
Tyler's odyssey of pain began at age two when he spiked a high fever. The toddler seemed to be in constant pain, crying out whenever anyone touched him.
His father, Joe, took him to doctor after doctor, trying to figure out what was putting his little boy through such physical torture. For a while, it was believed Tyler had a form of muscular dystrophy.
“They tested him for everything before they finally found out what it was,” Joe Raybon says.
A doctor at Children's Hospital in Birmingham was finally able to make the correct diagnosis: Tyler was suffering from systemic onset juvenile rheumatic arthritis, a rare form of JRA.
That answer took a heartbreakingly long time in coming.
“By the time they figured out what was really wrong, the arthritis had already done its damage,” his dad says.
In fact, every joint in Tyler's body has been affected.
The autoimmune disorder has ravaged the joints of his fingers and bent his body. If he sits too long, “I get so stiff I can hardly walk.”
Because he can't flex his ankle, Tyler has to drag his left foot when he walks. “Basically, he goes through a pair of shoes every two weeks,” his dad says.
Why did it take so long to correctly diagnose Tyler's illness?
The problem largely lies in the fact there is no board-certified pediatric rheumatologist in the entire state of Alabama, not even on the staff of Children's Hospital.
Such specialists are trained to recognize and treat children's illnesses that affect joints, muscles, bones, connective tissues or blood vessels, often caused by autoimmune disorders.
“If there had just been someone in the state who knew what to look for, we feel like Tyler would be in a lot better shape today than he is,” Mrs. Raybon says.
Tyler's doctor at Children's Hospital concurs.
“If the disease had been caught sooner, Tyler wouldn't be as disabled,” Dr. Prescott Atkinson, director of allergy, immunology and rheumatology at Children's Hospital, says.
The difficult situation Tyler and other children in the state suffering from autoimmune diseases face is a reflection of a nationwide problem.
There is a severe shortage of board-certified pediatric rheumatologists, fewer than 200 in the entire nation.
It's a specialty that is poorly compensated in comparison with other medical specialties, Atkinson says.
“Patients are complicated, they take a lot of time, but there are no procedures to bill.”
The Children's Hospital physician believes having such specialists on staff at his hospital would provide better treatment to more of Alabama's youngsters.
“Children are not little adults. Medication has to be tailored to their age and size and rheumatologists who only deal with adults often have difficulty caring for young patients,” Atkinson says.
The Arthritis Foundation of Alabama is working to correct the problem. Plans are in place to raise $2 million initially to endow two chairs of pediatric rheumatology at the University of Alabama in Birmingham, which already has a nationally renowned adult rheumatology program with five endowed chairs.
A major tool in the foundation's fundraising efforts has made young Tyler one of the young stars of a special film.
Birmingham filmmaker Randal Crow, whose mother suffers from rheumatoid arthritis, spent a year making the 13-minute documentary highlighting JRA and three young Alabamians – Tyler, 18-year-old Julia Israel of Mountain Brook and 8-year-old Kimberlynn Clanton of Birmingham – living with the illness.
The documentary, “Kids Have Arthritis, Too,” debuted last month at a private fundraiser in Birmingham.
Viewers see on screen the dramatic difference between Julia, diagnosed with JRA and treated at an early age, and Tyler, whose long-delayed diagnosis has caused so much disability.
“It hurts. It is not fair to see someone his age in this condition,” his step mom says.
“We just want to get the word out to people, to help raise these funds and help prevent this happening to other kids.”
There are plans in the works to use the documentary as a fund-raising tool across the state, including right here in Butler County.
“We have talked with Mayor McLendon about the possibility of have a showing of the documentary here in Greenville and we are excited about that possibility. The mayor has also talked about holding a charity golf tournament out at Cambrian Ridge for the foundation,” Mrs. Raybon says.
Once the foundation raises the $2 million for the two positions at UAB, plans are in place to raise more money to endow a fellowship program to train doctors who want to become pediatric rheumatologists.
“Once we have a training program, we can grow our own,” Atkinson says.
In it for the long haul
The Raybon family has high hopes for the success of the Arthritis Foundation's fundraising efforts. They hope other children will not have to endure what Tyler has gone through.
The GMS student still has a long journey ahead of him.
“Tyler's a great child, he really is. He has come through a lot, but he's also still got a lot to go through,” Donna Raybon says.
“Once he passes puberty and quits growing, they will go in and break his bones.
So he'll have surgeries, and then rehab, and more surgeries and more rehab to look forward to…it will be a challenge.”
Joe Raybon says some doctors told him his son would never be able to walk or even live to be a teenager. Whatever comes, he plans to stand by his “little boy.”
“Tyler is going to stay with his daddy for as long as he needs me.”
The Magic City debut of “Kids have Arthritis, Too” has already helped one of its stars.
“After the showing of the film, a shoe store in Leeds sent Tyler a entire year's supply of shoes. That has been a big help,” his step mom says.
To learn more about JRA and the Alabama Juvenile Arthritis Fund, go to www.arthritis.org or call 1-800-879-7896.