What does arthritis mean to a growing child? For 2-year-old Bailey Warren, now 4, it started with a swollen knee, so painful she could not walk on it.

For Makenzie Johnson, now 9, the symptoms seemed at first to be the normal injuries of an active child – a swollen ankle at age 3, a jammed finger at age 5.

For both children, the diagnosis of a form of juvenile arthritis was slow in coming and hard to accept. Today, thanks to support from the Alabama Juvenile Arthritis Initiative of the Arthritis Foundation and a critical partnership between UAB and Children’s Hospital, both children are receiving treatment through the Alabama Clinic for Childhood Arthritis and Rheumatic Diseases, a clinic that did not exist two years ago.

"The last two years have been rocky, scary and depressing for us," said Kim Warren, Bailey’s mother. “But I can't imagine how many years we would still be suffering with Bailey hurting if it were not for these great doctors, medicines and the Arthritis Foundation helping us."

Just five years ago, the challenges of children with arthritis were compounded by the fact that there are fewer than 200 pediatric rheumatologists in the United States and no specialists at all in Alabama.

“If a child in Alabama was fortunate enough to have an accurate diagnosis, he or she received limited treatment by their pediatrician or, in rare cases, by an adult rheumatologist," said Arthritis Foundation Chapter President Kristen Whitehurst.  "If their families had the means and the time, these boys and girls could travel to another state to see a pediatric rheumatologist.”

All that changed in 2007 with the creation of the clinic, which has treated more than 1,000 children from Birmingham and throughout Alabama in its first two years. The clinic projects more than 1,500 outpatient visits in 2009 alone, about 150 percent more than in 2008. Each month, approximately 80 children with rheumatic diseases also receive intravenous medications in our state-of-the-art infusion suite, perhaps one of the busiest pediatric rheumatology infusion centers in the country.

Leading this effort is Dr. Randy Cron, director of pediatric rheumatology at UAB, who was hired in 2007 to fill the endowed chair in pediatric rheumatology established with $1 million in support from AJAI, including a grant from the Community Foundation of Greater Birmingham. Also joining him at the start was Dr. Tim Beukelman.

Together they developed a pediatric rheumatology program and made the most of the opportunity to work with nationally known researchers associated with the UAB Division of Clinical Immunology & Rheumatology, which regularly ranks among the top five such programs in the U.S. 

“We have now been here long enough that, with early and aggressive use of targeted biologic therapies for treating arthritis, we have a substantial number of children with juvenile idiopathic arthritis in complete remission," Cron said. "We are getting to the point that we are now able to taper some of these children off of all their medications. This is very exciting for us, for the kids, and their families.”

Remembering early days of the clinic
Cron recalled one of the first children he met, a young man Cron described as “emaciated and completely detached from the world around him.” Once diagnosed with systemic lupus erythematosus, the young man received highly aggressive treatment over several weeks and slowly began to return to awareness of his surroundings.

“Two years later, he now only receives intravenous therapy every three months in our Pediatric Rheumatology infusion center at Children’s Park Place,” Cron said. “He is now a healthy and happy young man, who is barely recognizable to me, in a very good way, from the state I met him two years ago in the Pediatric Intensive Care Unit at Children’s Hospital of Alabama.”

As awareness grows and clinic services expand, so do requests for diagnosis and treatment. With appointments now sometimes booked six to eight months in advance, the clinic welcomes a third specialist, Dr. Peter Weiser, to the team in September.

“We hope to recruit two additional Pediatric Rheumatology clinician scientists over the next two to three years,” Cron said. “This will allow us to care for patients in a timely fashion and push the field of Pediatric Rheumatology forward in terms of our research efforts.”

Other plans include the creation of a pediatric rheumatology fellowship program that will train new board-certifiable specialists, many of whom may remain in Alabama or the Southeast.  

“Our long term goal for the program is to be one of the top training programs in the country, sustaining a steady supply of trained specialists for the ever-increasing demand of pediatric rheumatologists nationwide,” Cron said.

With this addition to our already-high level of medical care in so many areas, we look forward to adding that to our list of great things to appreciate about our community.

CELEBRATING TWO YEARS OF SERVICE: On Thursday, Sept. 10, you can join the Arthritis Foundation in celebrating the clinic's second anniversary. Tours start at 5:30 p.m. at the clinic, 1600 Fourth Avenue South, at Children’s Hospital Park Place, with a reception following at 7 p.m. at Adamson Ford, 1922 Second Avenue South.

The Arthritis Foundation works on behalf of the more than 1.2 million individuals in Alabama affected by arthritis and rheumatic diseases. Efforts include the Alabama Juvenile Arthritis Initiative, exercise courses, Camp M*A*S*H (Make Arthritis Stop Hurting), patient education and legislative advocacy. You can help by finding out more about this disease through the Arthritis Foundation on line or at 205-979-5700.