New Program Cares for Kids with Neurocutaneous Syndromes

Neurocutaneous disorders are lifelong diseases that present challenges for patients and their families. For many children, getting the initial diagnosis is not easy. Patients often bounce between different doctors for answers. But when the diagnosis is made, there are specific medical guidelines that lead to many more visits to multiple clinics, even for children who do not have many problems.

“Neurocutaneous syndromes are complex disorders that require care from multiple specialists,” says Deborah Rukin Gold, MD, a pediatric neuro-oncologist at University Hospitals Rainbow Babies & Children’s Hospital.

The new Neurocutaneous Syndromes Clinic at UH Rainbow Babies & Children’s Hospital is the first area multidisciplinary clinic where children, adolescents and young adults with neurocutaneous syndromes can get advanced diagnostic and treatment services in one convenient location — from providers they trust. “With this clinic, we will improve quality of life and overall outcomes for these children by providing consistent, specialty care in a unified setting,” Dr. Rukin Gold says.

Understanding Neurocutaneous Syndromes

Neurocutaneous syndromes are present at birth and manifest differently, based on a child’s age. Symptoms can vary widely, even within families. Some children have barely noticeable symptoms, while others suffer with symptoms that affect their daily lives.

Neurofibromatosis Type I (NF1), the most common condition to be treated at the clinic, can affect many body systems. Changes in the neurofibromatosis gene cause the disease, which occurs in one out of every 3500 people in the U.S. Half of the time the genetic mutation is inherited from a parent. Others are due to a spontaneous genetic mutation; thus, the patient is the first in the family to develop NF.

Growths or tumors called neurofibromas can be seen in children with NF1. Tumors may develop along the nerves under the skin or deeper in the body. Benign tumors can also occur along the optic nerve or other areas of the brain. Most tumors are benign and do not require treatment, but children with tumors do require frequent checkups. Children with growing tumors may need treatment.

Other symptoms include café-au-lait marks on the skin, benign marking on the iris of the eye, freckles on the underarms and/or groin, learning disabilities, attention deficit disorder, short stature, large head, scoliosis or bone abnormalities.

The clinic also treats other neurocutaneous syndromes, including NF Type II, schwannomatosis, tuberous sclerosis and Sturge-Weber disease.

Specialty Care Helps Kids Thrive

Pediatric specialists from neurology, genetics, psychology, endocrinology, dermatology, hematology and oncology and ophthalmology work together to diagnose, treat and monitor children with these syndromes. Patients and families meet with various team members in one convenient location and receive referrals to other specialists, as needed.

“There is no cure for these disorders, but routine care makes a tremendous difference,” Dr. Rukin Gold says. “We know what problems kids may face. In some cases, we can prevent or delay complications, or we can identify medical problems and learning issues early and address them as quickly as possible.”

gold-deborah Deborah Rukin Gold, MD
Pediatric Neuro-oncologist and Director, Neurocutaneous Syndromes Clinic
UH Rainbow Babies & Children’s Hospital
Professor, Case Western Reserve University School of Medicine

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