Genetics Northern California

Neurofibromatosis Program

The Kaiser Permanente Northern California Regional Neurofibromatosis (NF) Program provides multispecialty team evaluation and case management for children and adults with neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2), and schwannomatosis.

Overview of the NF Clinic
NF Clinic Locations and Provider Team
What to expect at a clinic visit
Information about neurofibromatosis

Overview of the NF Clinic

The goal of the NF Program is to help patients with NF1, NF2, and schwannomatosis to function at a satisfactory level and maximize their quality of life throughout their lifespan. The NF Program nurse coordinators promote this goal upon referral to the NF Program by reviewing medical records, providing patient education, and interviewing the patient/family by phone. The patient may then receive any of the following services:

• Interval monitoring of NF issues
• Coordination of services and care to an NF specialist 
• Education and guidance for obtaining school testing for the child with learning issues  
• Consultation and evaluation by a multispecialty provider team 
• Individualized treatment plan   
• Case management for the NF condition while working with the pediatrician or primary care provider
• Psychosocial support

The Regional NF Program includes a separate pediatric and adult NF clinic. Pediatric patients transition into the adult NF clinic around 18 – 22 years of age. Adult patients may be referred to the NF Program for a plan of care and coordinated services concerning their NF issues.

NF Clinic Locations and Provider Team

The Pediatric NF Multispecialty Clinic is offered 5 times throughout the year at Kaiser Oakland Medical Center. The specialists includes a geneticist, genetic counselor, pediatric neurosurgeon, pediatric neurologist, pediatric neuroradiologist, developmental pediatrician, orthopedic surgeon, head and neck surgeon, nurse coordinator, pediatric occupational therapist, pediatric physical therapist, pediatric nutritionist, and social worker.

The Adult NF Multispecialty Clinic is offered 3 times throughout the year in the Department of Genetics at the Kaiser Oakland Medical Center. The specialists include a geneticist, genetic counselor, neurologist, neuroradiologist, neurosurgeon, chronic pain management specialist, orthopedic surgeon, plastic surgeon, head and neck surgeon, nurse coordinator, occupational therapist, physical therapist, nutritionist, and social worker.

A smaller satellite adult NF clinic is offered 3 times throughout the year in the Department of Neurology at Kaiser San Francisco Medical Center. The provider team includes an adult neurologist, nurse, and social worker. An individual appointment is scheduled for each patient. A plan of care and follow up is made and sent to the referring and primary care providers.

         NF Program Main Line                    (510) 752-5101

            Regional Neurofibromatosis Program Coordinators:  
                Cheryl Weigel, RN, MSN              (510) 752-1378

The NF Clinic Visit: What to expect at a clinic visit

The NF Clinic day begins in the morning with a social time for all patients to meet each other, learn about what will happen during the clinic visit, and provide the following printed resources:

• Overview of the NF conditions
• learning issues that can be present with NF1
• Deaf and Hard of Hearing  
• Vision Impairment  
• Department of Rehabilitation
• NF Inc California Support Group
• Children’s Tumor Foundation

Each patient is assigned a separate exam room and the specialty providers visit each patient according to the patient’s identified NF needs. The clinic visit lasts all morning.
Once the patient has been seen by the NF provider team, the patient goes home. The provider team then meets to discuss recommendations for each patient and a plan of care is develop.
Individual provider notes and a copy of the post clinic recommendations are posted in the patient’s electronic chart. A few weeks following the NF clinic visit, the patient is mailed a separate copy of the summary letter of the NF clinic visit recommendations.


About Neurofibromatosis

Neurofibromatosis, commonly known as "NF", is a disorder that causes tumors (mostly benign, or non-cancerous) to grow on nerves anywhere in the body. It can also affect other tissues such as skin, blood vessels, and bones.

Neurofibromatosis is sometimes incorrectly called "Elephant Man Disease", which is actually a different disorder.

Types
The Neurofibromatoses include 3 separate conditions:

The 3 types of neurofibromatosis are very different from one another. Although the 3 conditions are separate, they are all progressive, and all may involve nerve tumors.

 
Other Information
Research is being conducted at many universities and hospitals around the country.  Sometimes this is done in laboratories to learn more about what happens in NF cells.  There are some clinical trials available that involve patient participation.  You may visit the website of the Children's Tumor Foundation at www.ctf.org for up-to-date information on clinical trials.

How can I get more information?

Brochures about each of these conditions is available online from the Children's Tumor Foundation (CTF).
     Neurofibromatosis 1
     Neurofibromatosis 2
     Schwannomatosis

More NF resources and support