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Neurofibromatosis
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The Indiana University Neurofibromatosis Clinic is based at Riley Hospital for Children in Indianapolis, Indiana.  We are the only clinic for comprehensive care of those with neurofibromatosis in the state of Indiana.

We provide diagnosis, genetic counseling, and management for patients of all ages with neurofibromatosis (NF).  Patients with NF type 1, NF type 2 and schwannomatosis receive care.  The clinic also provides referrals to specialists, including dermatologists, neurosurgeons, oncologists, ophthalmologists, orthopedic surgeons, otolaryngologists and plastic surgeons who work closely with the NF clinic.

We care for over 200 patients each year. One of the strengths of our clinic is providing a smooth transition from childhood care to the care of adolescents and adults with the physicians in our clinic.  We are recognized by Neurofibromatosis Inc. and are an affiliate clinic in the Children's Tumor Foundation Clinic Network.

Neurofibromatosis Type 1 (NF1) is a common genetic disorder that affects 1 in 3000 people.  It affects women and men equally and affects all ethnic and racial groups. There is a 50% chance that a child of a parent with NF1 will have NF1.  In addition, approximately half of the people who have NF1 developed it spontaneously without inheriting the disease from a parent.  NF1 affects several body systems including the skin, nerves, blood vessels and bone.  The most common findings are benign skin tumors or neurofibromas.  Although these tumors are not malignant, they can be bothersome because of their appearance and because they can become uncomfortable and even painful.  Benign (non-cancerous) tumors can also occur in the brain, along the optic nerve, or along other nerves in the body.  Occasionally, these benign tumors can become cancerous.  Learning disabilities, scoliosis (curvature of the spine) and high blood pressure are common in people with NF1.

 Neurofibromatosis Type 2 (NF2) is less common than NF1 and affects 1 in 40,000 people.  There is a 50% chance that a child of a parent with NF2 will have NF2, but approximately half of the people who have NF2 develop it spontaneously without inheriting the disease from a parent.  The most common problem in NF2 is benign (non-cancerous) tumors on both nerves that go from the brain to the ear (acoustic neuromas or vestibular schwannomas).  These tumors can cause ringing in the ears, balance difficulties and hearing loss.  Occasionally, other benign tumors can form in the brain or spinal cord.  Early formation of cataracts is also common in people with NF2.

Schwannomatosis is a form of neurofibromatosis that is not well understood.  Patients with schwannomatosis have benign (non-cancerous) tumors called schwannomas that form on many nerves in the body.  Many people with schwannomatosis also have very severe pain.  Only 10% of patients with schwannomatosis inherited the disease from a family member.  We do not completely understand the genetics of schwannomatosis.

Services in the Indiana University Neurofibromatosis Clinic are tailored to the patient's specific needs, as NF is a highly variable condition.  Besides patient care, collaboration with researchers to further the understanding of NF is a main goal of this program.  There is a great deal of federally funded NF research at Indiana University School of Medicine.  The research is focused on understanding tumor formation, changes from benign to malignant tumors, abnormalities in bone formation, vascular changes, learning disabilities and abnormal pain sensation. Patients may be included in research projects if they meet specified criteria and are interested in participation.

The Indiana University Neurofibromatosis Clinic can be contacted with questions about neurofibromatosis, general information about the NF Clinic, and research related to neurofibromatosis being conducted at Indiana University.  For questions that are specific to a patient or to refer a patient to the NF Clinic, please contact our scheduling service at (317)948-7450.  We request that the patient's primary care physician make referrals.   


Laurence E. Walsh, M.D., Faculty

Lisa H. Smith, M.D., Faculty
Jennifer Dickerson, M.S., C.G.C., Genetic Counselor
Yvonne Hayden, R.N., Clinic Coordinator 

 

Ask the Doctor Session on NF1
10 am - Noon, April 21, 2012
Riley Outpatient Center, Indianapolis, IN
Free Registration:  http://askthedoctorindy.eventbrite.com/

NF1 Symposium
1 pm to 4 pm, May 12, 2012
Riley Outpatient Center, Indianapolis, IN
Registration Link: http://grow.ctf.org/IUSymposium2012

NF Forum - National Patient and Family Neurofibromatosis Symposium
June 8-10, 2012, New Orleans, LA
For more information and registration: http://www.ctf.org/myblog-admin/1548-save-the-date-2012-nf-forum-and-nf-conference.html

NF Walk Indianapolis
Sunday, August 24, 2012
For more information and registration: http://www.ctf.org/nfwalknew.html 

Quality of Life Survey for adults and teens with NF1:
Indiana University is looking for adult and youth volunteers to take a survey about NF1 and how it affects your health and well being. This study will help to better understand how NF1 affects your health and well being, and help to measure how well treatments for NF1 are working. We need adults with NF1, parents of children with NF1 and young adults 14 years and older with NF1. The study consists of an online survey about NF1, what it is like to have NF1 and how it affects health and well being. The study is completely anonymous and does not require any personal information. To take the online survey choose one of the following:

Adults with NF1
Parents of children with NF1
Youth 14 years or older with NF1

Summer Camps:

Camp New Friends   http://www.brainycamps.com/brainy-camps/camp-new-friends.html

NF Summer Camp    http://www.ctf.org/Living-with-NF/nfcamp2012.html

 

Additional Information/Support:

Children's Tumor Foundation: www.ctf.org

Neurofibromatosis Inc, Midwest: www.nfmidwest.org