What is neurofibromatosis?
Neurofibromatosis (NF) is a genetically transmitted disorder in which nerve tissue grows tumors that may be harmless or cause serious damage by compressing nerves and other tissues. The tumors may cause bumps under the skin, colored spots, skeletal problems, pressure on spinal nerve roots, and other neurological problems. Our clinic at Florida Hospital for Children, we provide care for children, adolescents and adults who have been diagnosed or are suspected of having Neurofibromatosis (NF). Specialized physicians and their teams can diagnose NF after a thorough physical exam and help manage the progression that occurs, such as:
- Complications from tumor formation
- Abnormal spine and bone development
- Chronic pain management
- Cosmetic abnormalities requiring surgery
- Cognitive or behavioral changes
- Benign and malignant tumors
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 medical professionals from many fields who work together as a multidisciplinary team. This clinic provides the following services at one location:
- Diagnosis Support and education
- Clinical trial information and participation
- Specialty referrals
- Condition monitoring and follow-ups
- Genetic counseling
To learn more about the Children's Tumor Foundation, visit http://www.ctf.org
Living with Neurofibromatosis
One of the most important missions 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 skeleton, leading to a host of physical and neurological issues.
The specialists at Florida Hospital for Children are focused on treating NF and helping those who must live with it lead as normal a life as possible.
While there is no cure for the disease, available treatments — surgery, radiation therapy and chemotherapy — can help keep NF in check. 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 therapies. These trials offer the best hope of finding effective ways to control, and perhaps even beat, NF some day.
The Neurofibromatosis Clinic is located at:
2501 North Orange Avenue, Suite 589 Orlando, FL 32804.
For more information about our services or to schedule an appointment, please contact Jennifer Ketchersid, RN, at (407) 303-KIDS.
Jennifer Ketchersid, RN, is the Clinical Coordinator for the Neurofibromatosis Clinic. With a nursing background in pediatrics, she will be the patient’s first contact with the clinic. As a clinical concierge, she will assist you with:
- Specialist referrals
- Procedure information
- Clinical trial availability
- Disease information
- Insurance questions
- Working through your specific needs
Clinical Coordinator services are complimentary, confidential and no referral is necessary. Prior to your clinic appointment Ketchersid will contact you, note your medical history and help answer any questions.