A female nurse consoles a young female patient in her hospital bed.

Nationally Recognized Neurofibromatosis Clinic

The Neurofibromatosis Clinic at AdventHealth 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

We’re here to help you find the right physician or a location that’s convenient for you.

What is Neurofibromatosis?

Neurofibromatosis 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 development problems, pressure on spinal nerve roots, and other neurological problems. Our NF clinic provides care for children, adolescents and adults who have been diagnosed or are suspected of having NF. Specialized physician teams can diagnose neurofibromatosis after a thorough physical exam and help manage any 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
Two brothers getting ready to go out while putting their shoes on.

Neurofibromatosis Treatments

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.

A Patient-Centric System Begins With Our Dedicated Care Navigator

For more information about our services or to schedule an appointment at our NF clinic, please contact Neurofibromatosis Clinic care navigator Kara Colson, RN, at 407-303-7945.

As clinical care navigator, she will assist you with:

  • Appointments
  • Specialist referrals
  • Consultations
  • Procedure information
  • Clinical trial availability
  • Disease information
  • Insurance questions
  • Working through your specific needs

Care navigator services are complimentary, confidential and no referral is necessary. Prior to your NF clinic appointment, Kara will contact you, note your medical history and help answer any questions.

Meet Our Medical Director

Chenue Abongwa, MD

Pediatric Hematology and Oncology

A highly experienced clinician, Dr. Abongwa specializes in pediatric neuro-oncology and provides his patients with professional and compassionate holistic medical care.

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