HOPE FOR A GIRL WITH A RARE INFLAMMATORY MUSCLE DISEASE
Proper diagnosis and coordinated care helped Nylah Connor get back to enjoying her childhood.
Excerpted from the Spring 2018 Duke Children's Stories, from an article written by Whitney J. Palmer
It was a normal field trip in March 2016 for seven-year-old Nylah, including a two-and-a-half-mile hike on a hot day. She got dehydrated and didn’t reapply her sunscreen, but everything was fine when she returned home. Even the next school day was normal.
But one week later, things were vastly different. Nylah, a U.S. Virgin Islands resident, started complaining about leg pain. And she began declining rapidly. Local doctors initially diagnosed her with a condition called rhabdomyolysis and recommended that she be on bed rest and stay hydrated. “Three weeks later, she wasn’t at all like herself,” said her mother, Alexis Connor. “She was pretty much in bed all the time.”
THE RIGHT DIAGNOSIS LEADS TO THE RIGHT CARE
Desperate to help their daughter, Connor and her husband searched for other medical help, and they were referred to Nicklaus Children’s Hospital in Miami, Florida. That’s when Nylah was accurately diagnosed with juvenile dermatomyositis (JDM).
Juvenile dermatomyositis, a rare disease that can be triggered by sun exposure, causes muscle, skin, and blood vessel inflammation.
Despite having a diagnosis, Nylah’s condition worsened. After many failed medications and multiple hospital stays, Connor pursued a doctor with JDM expertise. “We decided we were going to move to the best place for her, where people were doing more research on her condition.”
The search for answers led to Duke’s Lenox Baker Children’s Hospital and Ann M. Reed, MD, chair of the department of pediatrics. The hospital’s inflammatory muscle disease clinic offers extensive experience in treating patients like Nylah.
When Nylah arrived at Lenox Baker, she weighed 50 pounds and had full-blown symptoms. She could breathe on her own, but needed a feeding tube. Her muscles were so weak, she was mainly confined to a wheelchair and had to wear a spinal brace due to spinal compression fractures. Reed immediately assembled a multidisciplinary team including a gastroenterologist, endocrinologist, pulmonologist, neurologist, physical and occupational therapists, and nurses.
“Our care is circulated around the patient— not the patient coming to physicians or providers. We could all discuss her care together at the same time.”
AN AMAZING RECOVERY
Today, Nylah looks like her old self. She still has leg weakness, but, Reed says, she’s regained 90 percent of her strength, mobility, and flexibility. She faces one more year of medication and must maintain her physical therapy and strength training.
Connor credits Lenox Baker’s multidisciplinary approach for Nylah’s recovery and continued success. From the first appointment, she says, Reed gave her family hope that Nylah would return to them—that she would get her child back. And Nylah agrees. “All the doctors and therapists are awesome,” she says. “They gave me hope that I would get better.”
Special equipment is so integral to a patient’s recovery that a new $2 million fund, the Lenox Baker Children’s Hospital Foundation Fund, has been established to support patient care, education, and resources for children with musculoskeletal and neurodevelopment disorders.
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