Akron Children’s offers multi-disciplinary care for neurofibromatosis

Dr. Erin Wright

08-19-2020 (Ohio)

Akron Children’s has a new multi-disciplinary clinic for children and teens with neurofibromatosis.

Neurofibromatosis type 1 (NF1) is one of the most common genetic disorders, affecting approximately 1 in 3,000 individuals. While some features may be present at birth, it is usually recognized in early childhood with pigmented spots on the skin. Symptoms can also involve the skeletal, cardiovascular and nervous systems.

Akron Children’s clinic brings together specialists from developmental/behavioral  pediatrics, genetics, neurology, oncology and ophthalmology. Other specialists are available to support patients’ individual needs.

“We recognized the significant burden this multisystem disorder can place on patients who require the care of multiple specialists,” said Erin Wright, MD, pediatric neuro-oncologist. “Our multidisciplinary clinic enables patients to see all the specialists they need in one day, while providing enhanced care coordination and access to the most current treatments available.”

NF1 can affect a patients’ physical appearance, causing benign tumors over the skin. Patients may have frequent headaches, seizures, ADHD, skeletal abnormalities, blood pressure issues, gastrointestinal problems and other conditions that require the care of numerous specialists.

“Because it may manifest in other ways as the child grows, regular monitoring to address ongoing medical and developmental needs is essential to minimize the risk of more serious complications,” added Dr. Wright.

The clinic also provides coordinated care for children with NF2, as well as schwannomatosis, which are less common disorders that are characterized by the development of different types of tumor. 

About 300 patients with neurofibromatosis are currently being treated at Akron Children’s. The pediatric-focused clinic treats patients from birth to age 25. New cases are accepted until age 21.

Akron Children’s hopes to join a consortium for patients with NF and schwannomatosis through the Children’s Tumor Foundation. Participation in this consortium will potentially give patients access to the latest clinical trials.