By Bernard S. Little
WRNMMC Public Affairs staff writer
Navy Cmdr. (Dr.) Margaret Read paused on a couple occasions to compose herself as she described her son’s battle with a rare autoimmune disease. The Navy officer shed a few tears while discussing the challenges her family faced and her son’s courage.
Read was one of several speakers during the 1st Symposium on Autoinflammatory and Immune-Dysregulatory Illnesses at Walter Reed Bethesda on Sept. 19.
“This [symposium] is a continuing endeavor in [Walter Reed National Military Medical Center’s] legacy of discovery, education, research and phenomenal care for our patients and their families,” said Army Col. Michael S. Heimall, WRNMMC director.
The Children’s Center at WRNMMC and the National Institutes of Health presented the symposium, focused on developing a multi-disciplinary joint program/center to assess and treat patients with autoinflammatory and other immune-dysregulatory diseases. In addition, organizers said a goal of the event was to establish a network of pediatric consult services between WRNMMC and NIH.
“Whenever we do something like this, it's absolutely important for us to have the patient's and family's perspective because what we're in the business of doing is curing disease and improving quality of life," Heimall added.
“The goal of our research should be to take improvements in care and technology to the bedside and into the exam rooms that really make people’s lives better,” the WRNMMC director continued. “We’re on a quest at Walter Reed Bethesda to integrate education and research into our patient care activities. All three have to work together if we’re going to advance the science and knowledge of medicine,” he stated.
As her son, David, stood beside her, Read shared the story of their battle with Systemic Juvenile Rheumatoid Arthritis, also called Still's Disease. Named after English pediatrician George Frederic Still who first described it, Still’s Disease is the rarest form of juvenile rheumatoid arthritis and affects the entire body. It accounts for just 10 to 20 percent of all JRA cases, impacting about 25,000 to 50,000 children. The condition causes extreme fatigue; high, spiking fevers; rash; joint aches; swelling of lymph glands; enlargement of the spleen and liver; inflammation of the lungs or around the heart and other symptoms.
“We joined this community in June 2008, just a few weeks after Davy’s 5th birthday and when his body decided to attack itself,” said Read, an optometrist who currently works at the U.S. Navy, Bureau of Medicine and Surgery as executive assistant for the deputy chief of BUMED for Readiness and Health.
She explained David spent about a month in the hospital’s intensive care unit while doctors tried to determine his illness and why his body didn’t respond to treatments. She added her son received “outstanding care” from WRNMMC providers, where his illness was eventually diagnosed.
David, now 13, looks like a healthy teenager and is nearly as tall as his mother. “He is doing well but continues to be monitored closely,” she said. While the cause of Still’s Disease is not known, with proper care children can lead normal lives.
“I know in my heart Dr. [Olcay] Jones saved his life,” Read said of David. She added Jones’ colleagues in the research and clinical communities assisted her in diagnosing and treating David.
“To put this into perspective, our older son, who is five years older than Davy, had he had the same illness, he wouldn’t have made it,” Read added. “The medication that Davy finally responded to had just become available to him.
“Treatment, study and research are vital to this community for these children to have positive outcomes,” she stated.
Jones, division chief for pediatric rheumatology at WRNMMC, and Dr. Raphaela Goldbach-Mansky, acting chief for translational autoinflammatory disease at NIH, planned and directed the symposium. They explained there’s a need for more autoinflammatory and immune-dysregulatory disease research and care, and Walter Reed Bethesda offers full inpatient and outpatient services in pediatrics, including full-time pediatric rheumatology service.
Karen Durrant, a pediatric nurse who is also a mother of a child with an autoinflammatory illness, explained the need for more providers to know the warning signs for autoinflammatory and immune-dysregulatory illnesses. “Autoinflammatory diseases are rare, often lifelong conditions,” she stated.
Early diagnosis and treatment for autoinflammatory and immune-dysregulatory illnesses “can greatly reduce systemic damage and in some cases, save lives,” Durrant continued. “Quality of life is greatly improved with treatment. This can positively impact the patient’s future,” she concluded.