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Genetic and Rare Diseases Information Center (GARD)

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Neurofibromatosis type 1


Other Names for this Disease

  • NF1
  • Recklinghausen's disease
  • Type 1 neurofibromatosis
  • Von Recklinghausen disease
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Your Question

My son has what the doctor is calling fibromas on his legs that have been growing for about 2 years. Both legs have huge tumors on them and growing all the time. My son has been diagnosed with neurofibromatosis.  My understanding is that there is no cure?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

How might neurofibromatosis type 1 (NF1) be treated?

There is currently no way to prevent or stop the growth of neurofibromas associated with NF1. Those that are disfiguring or irritating may be surgically removed. Treatment for malignant neurofibromas (occurring in 3 to 5 percent of cases) may also include radiation therapy or chemotherapy.[1][2] Optic gliomas that threaten vision may be reduced in size by surgery or chemotherapy in some cases. Surgery can also correct some of the bone malformations (such as scoliosis) associated with NF1.[1][2]
Last updated: 6/6/2012

What is the prognosis for neurofibromatosis type 1?

The prognosis for NF1 depends on the severity of symptoms in each individual. Most people experience mild to moderate symptoms that are not life-threatening. In most (but not all) cases, symptoms tend to worsen over time (the condition is progressive). The majority of affected individuals have a normal life expectancy.[1]

Last updated: 6/8/2012

How can I learn about research involving neurofibromatosis type 1?

The U.S. National Institutes of Health, through the National Library of Medicine, developed ClinicalTrials.gov to provide patients, family members, and members of the public with current information on clinical research studies. Visit the site to search for clinical trials for neurofibromatosis type 1. After you click on a study, review its "eligibility" criteria to determine its appropriateness. Use the study‚Äôs contact information to learn more. Check this site often for regular updates.

You can also contact the Patient Recruitment and Public Liaison (PRPL) Office at the National Institutes of Health (NIH). We recommend calling 1-800-411-1222 to speak with a specialist, who can help you determine if you are eligible for any clinical trials. If you are located outside the United States, and would like to be contacted via telephone, you will need to contact PRPL and provide your telephone number in full, including area code and international dialing prefix.

Patient Recruitment and Public Liaison Office
NIH Clinical Center
Bethesda, Maryland 20892-2655
Toll-free: 1-800-411-1222
Fax: 301-480-9793
E-mail: prpl@mail.cc.nih.gov
Web site:  http://clinicalcenter.nih.gov/

If you are interested in enrolling in a clinical trial, you can find helpful general information on clinical trials at the ClinicalTrials.gov Web page. Resources on many charitable or special-fare flights to research and treatment sites and low-cost hospitality accommodations for outpatients and family members, as well as ambulance services, are listed on the Web site of the Office of Rare Diseases Research (ORDR), part of the National Institutes of Health.

Last updated: 6/8/2012

References
Other Names for this Disease
  • NF1
  • Recklinghausen's disease
  • Type 1 neurofibromatosis
  • Von Recklinghausen disease
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.