The Neurofibromatosis Clinic at AdventHealth for Children, formerly Florida Hospital for Children, is the second largest neurofibromatosis (NF) clinic in the country, seeing more than 400 patients per year. Committed to improving the quality of life for those living with the disease, we provide patients with access to medical professionals from many fields who work together as a multidisciplinary team. This clinic provides the following neurofibromatosis treatments and services at one location:
- Diagnosis of neurofibromatosis
- Support and education
- Clinical trial information and participation
- Specialty referrals
- Condition monitoring and follow-ups
- Genetic counseling
The central mission of the Neurofibromatosis Clinic is to help children, adolescents and adults learn to live with the disease and keep it under control. Left unchecked, the disorder can cause serious damage as the tumors grow, putting increased pressure on the nerves and other tissues and affecting the spinal nerve roots and skeletal development, leading to a host of physical and neurological issues.
While there is no cure for the disease, available treatments — surgery, radiation therapy and chemotherapy — can help keep NF in check. Neurofibromatosis treatment depends largely on the patient, the type and location of the tumors, and the chance of them returning once they are removed.
The specialists at the Neurofibromatosis Clinic work closely with the patient and family to review all the options and create an individualized plan that includes counseling, education, treatment and follow-up. Depending on the circumstances, the patient may also be asked to participate in clinical trials to test new neurofibromatosis treatments and therapies. These trials offer the best hope of finding effective ways to control, and perhaps even beat, NF some day.