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Neurofibromatosis Clinic

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What is the Neurofibromatosis Clinic?

At Florida Hospital for Children, we offer a clinic to provide care for children, adolescents and adults who have been diagnosed or suspected to have neurofibromatosis, a genetically transmitted disorder causing tumors, usually benign (non-cancerous), to grow on the nerves and surrounding tissues. The specialized physicians with our clinic can diagnose neurofibromatosis after a thorough physical exam.

Once diagnosed, a team of specialists can help manage the progression that occurs with neurofibromatosis, such as:

  • Complications from tumor formation affecting the eyes and nervous system
  • Abnormal spine and bone development
  • Chronic pain management
  • Cosmetic abnormalities requiring surgical interventions
  • Cognitive or behavioral changes
  • Benign and malignant tumors

Specialized Neurofibromatosis Treatment

Committed to improving the quality of life for those living with the disease, the Neurofibromatosis Clinic at Florida Hospital for Children provides patients with access to various professionals from many fields. These physicians work together as a multidisciplinary team and provide the following services:

  • Diagnosis
  • Support and education
  • Clinical trial information and participation
  • Specialty referrals
  • Condition monitoring and follow-ups
  • Genetic counseling

Living with Neurofibromatosis

One of the most important missions of the Neurofibromatosis Clinic is to help children and adolescents learn to live with the disease and keep it under control. Left unchecked, the disorder can cause serious damage as the tumors grow and put increased pressure on the nerves and other tissues. Plus, the tumors can affect the spinal nerve roots and skeleton, leading to a host of physical and neurological issues.

Thankfully, the specialists at Florida Hospital for Children are focused on treating the disease and helping those who must live with neurofibromatosis lead as normal a life as possible.

While there is no cure for the disease, available treatments – surgery and chemotherapy – can help keep neurofibromatosis in check. The course of treatment depends largely on the patient, the type and location of the tumors, and the chance of them returning once they are removed.

How Do We Begin Treatment for Neurofibromatosis?

When you’re ready, call us at 407-236-0006 and a skilled Children’s Care Coordinator will work with you and your physician’s office to coordinate your child’s care, answer your questions and explain the next steps. Their services are complimentary.

We are proud to be one of the 31 affiliated clinics in the Neurofibromatosis Clinic Network (NFCN). The NFCN is a nationwide program that recognizes neurofibromatosis clinics in an effort to standardize and improve clinical care.