Neurofibromatosis 1 (NF1) is a genetic disorder that affects the brain, spinal cord, nerves, skin, and other systems in the body. It can cause tumors, called neurofibromas, to grow along nerves in the body, and on or under the skin. As the tumors increase in size, they can press on vital areas, causing problems in the way the body functions.
To address the many needs of children with NF1, we created the Neurofibromatosis Program, a collaborative program in which your child has access to the expertise of specialists in Developmental Pediatrics, Genetics, Neurology, Orthopedics, Speech Therapy, Psychology, and several other medical and therapeutic areas. This program meets the staffing and clinical genetic consulting parameters set by the National Neurofibromatosis Foundation and Neurofibromatosis, Inc.
Working together, we create a course of treatment for your child that includes removing the neurofibromas for cosmetic purposes, treating any complications they may have caused (including scoliosis and long bone deformities), and monitoring them for any malignant or cancerous changes. We also provide intervention for children with speech or learning disabilities and self-esteem issues.
As your child approaches age 18, we will work with you to transition him or her to adult care. Adult patients with the disorder are referred to local specialists in Delaware, or to adult genetics centers in Philadelphia.
Because Neurofibromatosis II (NFII), a variation of the disease that causes tumors on the nerves in the ear, typically doesn’t begin to show symptoms until adulthood, we do not see patients with NFII at our program. However, we can refer people with this disorder to other doctors and facilities as necessary.