Neurofibromatosis type 1 (NF1) is one of the most common genetic disorders, affecting approximately 1 in 3,000 individuals. Children with NF1 frequently have noncancerous tumors on their skin, but it can also affect other organ systems, such as your child’s skeletal, cardiovascular and nervous systems.
To help manage this complex condition, Akron Children’s has created a one-day neurofibromatosis (NF) clinic with specialists from developmental/behavioral pediatrics, genetics, neurology, oncology and ophthalmology. Other specialists are also available to support your child’s individual needs.
If your child has NF1, they may experience frequent headaches, uncontrolled seizures, ADHD, skeletal abnormalities, blood pressure issues, gastrointestinal problems and other conditions requiring the care of numerous specialists. These symptoms may also change as your child grows. They may also require chemotherapy or surgery.
Patients are seen from birth to age 25. New cases are accepted until age 21. The NF clinic also provides coordinated care for children with similar conditions. This includes NF2, which is less common than NF1 and usually diagnosed in early adolescence, and schwannomatosis, a condition that causes a different type of noncancerous tumor.
Pediatric Endocrinologist; Director, M & M Conference and Residency Teaching Elective
Director, Neuro-Oncology; Director, Shannon E. Wilkes Targeted Therapy Program; Co-Director, Neurofibromatosis Clinic; Pediatric Neuro-Oncologist
neurofibromatosis type 1, NF1, neurofibromatosis type 2, NF2, schwannomatosis