By UNIVERSITY OF IOWA STEAD FAMILY CHILDREN’S HOSPITAL
IOWA CITY, Iowa — Gwen White is a sweet, positive, and caring girl who is rarely without a smile. Her spirit and attitude have carried her through some tough challenges that few have ever faced.
In late 2016, Gwen developed a rash on her hands and arms. Her parents, Kerstin Quattromini and Tom White, took Gwen to her local pediatrician, who diagnosed her with eczema (dry, itchy skin) and prescribed a steroid cream.
Over the next few weeks, however, Gwen’s rash had not subsided, and she was diagnosed with two additional skin conditions that cause itching — scabies and psoriasis. Around that time, Gwen’s parents received an email from her gym teacher. Gwen didn’t have the energy to participate in gym class and even needed help getting up from the floor.
“We knew something was going on, but we didn’t know what,” recalls Kerstin.
Gwen’s parents took her to a local dermatologist to address the rash. Again, she was prescribed a steroid cream. When the cream only minimally helped Gwen’s symptoms, her doctor suggested a skin biopsy and lab testing.
“We were kind of scared at first, but it was Gwen who said, ‘No, I want to know what’s wrong with me,'” remembers Kerstin.
Gwen’s lab results revealed her true diagnosis: juvenile dermatomyositis, a rare autoimmune disease in which the immune system attacks blood vessels throughout the body, resulting in inflammation and muscle weakness. It affects just three in 1 million children each year.
“They said we needed to get to University of Iowa Stead Family Children’s Hospital right away, and that doctors were already waiting for us,” Kerstin says.
Gwen was immediately admitted to the children’s hospital, where Iowa’s only pediatric rheumatology specialists began aggressive treatment.
“They said, ‘We know exactly what’s going on. We know how to nip this thing in the bud, and can put you in a medical remission,’ and they have. We wouldn’t be able to do that anywhere else,'” recalls her father, Tom. “It was a relief. You can’t fight something until you know what you’re fighting.”
Gwen underwent hours of MRI scans and ultrasounds to determine how much her condition had damaged her body. Luckily, while she had severe muscle inflammation, there was no muscle deterioration.
Gwen underwent a year of physical therapy to regain muscle strength and function and began receiving weekly injections at home. She now takes 13 pills each day and comes to UI Stead Family Children’s Hospital monthly for immunoglobulin and steroid infusions, which take nearly eight hours. The sun can activate her disease, so she wears sunscreen daily — even during school to protect her from UV lights.
While juvenile dermatomyositis has no cure, Gwen’s disease is currently not active and she’s in medical remission. Gwen and her parents are grateful for the care team who helped get her to this point.
“They’re just the best you can hope for,” says Tom. “This children’s hospital means a change in your life for the best. It’s the place to go if you need answers.”
Gwen, who wants to be a physician assistant when she grows up, has advice for other kids who may be nervous to come to the hospital.
“Of course it’s scary to be at a hospital. It’s hard getting shots and stuff, but once it’s over, you feel really relaxed,” says Gwen. “It feels like you’re at home, but just in a different place.”