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NIH officially opened its first pediatric rheumatology clinic during a reception held on Sept. 21. NIAMS, which sponsored the reception, organized the specialty clinic at the CC.
The clinic offers diagnosis, evaluation, and treatment for children with arthritis and other chronic rheumatic diseases. It also serves as a specialty care facility for children through age 17 who are suspected of having or have a confirmed diagnosis of a rheumatic disease.
“This project represents a coming together of the community and the Clinical Center, and we thank everyone who was involved,” said Dr. Peter Lipsky, NIAMS scientific director. “The clinic will help scientists gather research data we so badly need, especially since rheumatic diseases in children vary considerably from those in adults.”
Dr. Lipsky also spoke on behalf of Dr. Stephen I. Katz, NIAMS director, saying, “Marking the opening of the NIH Pediatric Rheumatology Clinic means making a strong commitment to research for children with rheumatic diseases, which are costly, chronic, and, by nature, devastating. The research information that we gather will ultimately translate into meaningful information and data.”
The youngest speaker at the reception, KaLea Kunkel, 16, from Oregon, Mo., has juvenile scleroderma. She, like her three siblings, including one who is adopted, all have a rheumatic disease.
“I am here representing the more than 300,000 kids with a rheumatic disease, which may be invisible to the outsider. But the truth is that these irreversible diseases affect every aspect of a child’s life.”
Other speakers included KaLea’s mother, Ann Kunkel, who also has a rheumatic disease, and is an advocate for the American Juvenile Arthritis Organization (AJAO). Another speaker, Renee Thomas, chair of AJAO, presented an award to Lipsky and NIAMS for ongoing work in juvenile rheumatic diseases.
In speaking about the reception and clinic, Thomas said, “This is a wonderful celebration. Children walking through these doors will be very fortunate. Working together, we can make the dream come true to eventually cure our children who have arthritis.”
During the ceremony, CC Director Dr. John Gallin, pledged to assist with the needs of the clinic.
“As the clinic project evolves and needs become clear, ask us to help,” said Dr. Gallin. “We are fully committed to this project.”
The clinic will expose additional doctors to the subspecialty of pediatric rheumatology, an area of medicine that is greatly underserved. According to a 1999 report from the American Board of Medical Specialties, there are only 162 pediatric rheumatologists in the United States, and most are clustered around large cities.
Staffing the clinic are a host of medical professionals from NIH and the private sector, including pediatric rheumatologists, pediatricians, nurse practitioners, research nurses and fellows.
“Rheumatic diseases in children can compromise many developmental and educational tasks,” said Dr. Barbara Mittleman, NIAMS director of scientific interchange. “Early and effective treatment can restore or improve the chances of kids with rheumatic diseases enjoying childhood.”
“This is a dream come true,” said Dr. Robert Lipnick, a pediatric rheumatologist in private practice in Bethesda, who helps staff the clinic along with Dr. Karyl Barron, an NIAID pediatric rheumatologist; and Dr. Raphaela Goldbach-Mansky, an NIAMS pediatrician.
“I am extremely excited about this clinic,” Dr. Lipnick said. “It will provide a tremendous opportunity for training young physicians to diagnose and treat children with rheumatic dis- eases and for conducting innovative and unique research studies. It also offers children all over the country the chance to participate.”
Pediatric rheumatic diseases include juvenile rheumatoid arthritis, lupus, scleroderma, dermatomyositis, familial fever syndromes, and other chronic diseases that affect the joints, muscles, bones, and skin.
— by Janet Howard, NIAMS