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A Teen Health Success Story

17-year-old battling Systemic Juvenile Rheumatoid Arthritis and Macrophage Activation Syndrome.

Juvenile Rheumatoid Arthritis (JRA) affects about 50,000 children in the United States. It’s the most common type of arthritis and lasts for months or years at a time.

JRA is an autoimmune disease, which means the white blood cells lose the ability to distinguish the body’s own healthy cells from harmful bacteria and viruses. Instead of protecting the body as it’s supposed to, the immune system releases chemicals that damage healthy tissues, causing inflammation and pain.

Alexandra Bryans, 17, of Byram, had symptoms of JRA since the summer of 2005 when she was 12-years-old. It started with horrible knee pain. During the following months she developed uncontrollable high fevers, exhaustion and joint pain. It didn’t help that she was also anemic and soon enough, Alexandra was in the hospital meeting with several doctors.

“I ended up with a hematologist for my anemia, a thyroid doctor for my hormone irregularities and a rheumatologist,” said Alexandra.

Her rheumatologist had an idea of what the problem was, but the virus mysteriously went away for a few months. What Alexandra didn’t know at the time was that the disease could come in cycles and she was in remission for a few months.

Alexandra was officially diagnosed with JRA by her rheumatologist in January, 2006, when she became ill again. She went into a study for systematic JRA and tried different JRA medications that she took via IV or by a self-injected shot. She went through periods of feeling great. Although her body rejected certain medications, she didn’t have any trips to the hospital besides her frequent rheumatology appointments.

Then during her junior year of high school, Alexandra got really sick again, developing macrophage activation syndrome (MAS) which comes from JRA complications.

“I woke up with a horrible pain in my legs,” she said. It was an hour ride to the hospital where her rheumatologist worked. Alexandra was treated for her symptoms and was given morphine for the pain. On the way to MRI the following day, she had a seizure, followed by multiple seizures and organ failure. She stayed in a pediatric care unit for 12 days until her body began to stabilize. During her stay she lost a lot of blood and received several transfusions.

After being in a regular pediatric floor Alexandra was moved to an oncology pediatric floor because she was very prone to infection. “You can’t have flowers or anything like that, so it’s very clean.”

Alexandra missed over 93 days of her junior year in high school. She was in the hospital over two months before her body started stabilizing on its own without the help of IVs and transfusions. Physical therapy and pharmaceuticals helped to relieve the pain and inflammation and restore the function of her joints.

“Drugs can work miracles,” Alexandra said. “But there is always room for improvement.”

During her stay in the hospital, she broke up with her boyfriend. “I just didn’t want to deal with relationship problems when I was dealing with getting better,” she said.

But she grew closer to some of her friends who were there for her during that time. She said, “I stopped being friends with a lot of people who I understood weren't my real friends. I was definitely scared a lot of the time, but I tried not to let my situation get me down. It happened and I had to deal with it -- and make it my life and focus on getting through it. So in that sense I think I was strong and have come a long way since then.”

Currently Alexandra is in remission for JRA and there is no sign of MAS.

For more information, contact Mary Anne Christiano at: MaryAnneChristiano@Gmail.com

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