Also called: Also called: Recklinghausen’s disease, von Recklinghausen’s disease
Neurofibromatosis is a genetic disorder of the nervous system. It mainly affects how nerve cells form and grow. It causes tumors to grow on nerves. You can get neurofibromatosis from your parents, or it can happen because of a mutation (change) in your genes. Once you have it, you can pass it along to your children.
There are three types of neurofibromatosis:
- Type 1 (NF1) causes skin changes and deformed bones and usually starts at birth.
- Type 2 (NF2) causes hearing loss, ringing in the ears and poor balance. It often starts in the teen years.
- Schwannomatosis causes intense pain. It is the rarest type.
There is no cure. Treatment is aimed at controlling symptoms. Depending on the type of disease and how bad it is, treatment may include surgery to remove tumors, radiation therapy and medicines.
National Institute of Neurological Disorders and Stroke
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Genetics Home Reference: Neurofibromatosis type 1
(National Library of Medicine) - http://ghr.nlm.nih.gov/condition=neurofibromatosistype1
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Genetics Home Reference: Neurofibromatosis type 2(National Library of Medicine) - http://ghr.nlm.nih.gov/condition=neurofibromatosistype2
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Neurofibromatosis(National Institute of Neurological Disorders and Stroke) - http://www.ninds.nih.gov/disorders/neurofibromatosis/detail_neurofibromatosis.htm
Also available in Spanish http://espanol.ninds.nih.gov/trastornos/las_neurofibromatosis.htm
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JAMA Patient Page: Neurofibromatosis(American Medical Association) - Links to PDF - http://jama.ama-assn.org/cgi/reprint/300/3/352.pdf
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Learning about Neurofibromatosis(National Human Genome Research Institute) - http://www.genome.gov/14514225
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Neurofibromatoses(March of Dimes Birth Defects Foundation) - http://www.marchofdimes.com/pnhec/4439_1217.asp
Also available in Spanish http://www.nacersano.org/centro/9388_9979.asp
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Neurofibromatosis(National Institute of Neurological Disorders and Stroke) - Short Summary - http://www.ninds.nih.gov/disorders/neurofibromatosis/neurofibromatosis.htm
- What Is NF?(Children's Tumor Foundation) - https://www.ctf.org/about-nf/what-is-nf/
- Statins Show Little Benefit for Kids with Learning Disorder(07/15/2008, HealthDay) - http://www.nlm.nih.gov/medlineplus/news/fullstory_66982.html
- Diagnosis of NF1(Children's Tumor Foundation) - https://www.ctf.org/about-nf/diagnosis-of-nf1/
- Diagnosis of NF2(Children's Tumor Foundation) - https://www.ctf.org/about-nf/diagnosis-of-nf2/
- Managing NF1(Children's Tumor Foundation) - https://www.ctf.org/about-nf/managing-nf1/menu-id-141
- Managing NF2(Children's Tumor Foundation) - https://www.ctf.org/about-nf/managing-nf2/menu-id-208
- Schwannomatosis(Children's Tumor Foundation) - https://www.ctf.org/about-nf/schwannomatosis/
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Vestibular Schwannoma (Acoustic Neuroma) and Neurofibromatosis(National Institute on Deafness and Other Communication Disorders) - http://www.nidcd.nih.gov/health/hearing/acoustic_neuroma.asp
- NF2 Questions & Answers(Children's Tumor Foundation) - https://www.ctf.org/about-nf/nf2-questions-answers/menu-id-210
- What Is Neurofibromatosis?(Dolan DNA Learning Center) - Requires Flash Player - http://www.yourgenesyourhealth.org/nf/whatisit.htm
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ClinicalTrials.gov: Neurofibromatoses(National Institutes of Health) - http://clinicaltrials.gov/search/open/condition=%22Neurofibromatoses%22
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ClinicalTrials.gov: Neurofibromatosis 1(National Institutes of Health) - http://clinicaltrials.gov/search/open/condition=%22Neurofibromatosis+1%22
- Neurofibromatosis FAQs on Clinical Trials and Studies(Children's Tumor Foundation) - http://www.ctf.org/research/faqs/
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Genetics Home Reference: Neurofibromatosis type 1(National Library of Medicine) - http://ghr.nlm.nih.gov/condition=neurofibromatosistype1
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Genetics Home Reference: Neurofibromatosis type 2(National Library of Medicine) - http://ghr.nlm.nih.gov/condition=neurofibromatosistype2
References and abstracts from MEDLINE/PubMed (National Library of Medicine)
- Article: Hypofractionated CyberKnife stereotactic radiosurgery for acoustic neuromas with and without... - http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=pubmed&dopt=AbstractPlus&list_uids=18642654&tool=MedlinePlus
- Article: JAMA patient page. Neurofibromatosis. - http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=pubmed&dopt=AbstractPlus&list_uids=18632549&tool=MedlinePlus
- Article: Effect of simvastatin on cognitive functioning in children with neurofibromatosis... - http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=pubmed&dopt=AbstractPlus&list_uids=18632543&tool=MedlinePlus
- Neurofibromatosis -- see more articles - http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=search&db=pubmed&term=neurofibromatoses[majr]+AND+humans[mh]+AND+english[la]+AND+(jsubsetaim[text]+OR+jsubsetk[text]+OR+jsubsetn[text]+OR+patient+education+handout[pt]+OR+clinical+trial[pt]+OR+guideline[pt]+OR+review[pt])+NOT+(letter[pt]+OR+editorial[pt])&doptcmdl=summary&cmd_current=Limits&pmfilter_EDatLimit=last+1+Year&tool=MedlinePlus
- Glossary of Medical Terms(Children's Tumor Foundation) - https://www.ctf.org/about-nf/glossary-of-medical-terms/menu-id
- Neurofibromatosis Clinics(Children's Tumor Foundation) - https://www.ctf.org/component/option,com_docsearch/Itemid,118/
- Children's Tumor Foundation - http://www.ctf.org/
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March of Dimes Birth Defects Foundation - http://www.marchofdimes.com/
Also available in Spanish http://www.nacersano.org/
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National Institute of Neurological Disorders and Stroke - http://www.ninds.nih.gov/
Also available in Spanish http://espanol.ninds.nih.gov/
- NF Facts and Statistics(Children's Tumor Foundation) - https://www.ctf.org/about-nf/facts-statistics/
- Neurofibromatosis(Nemours Foundation) - http://kidshealth.org/parent/system/ill/nf.html
- Brain and Nerves - http://www.nlm.nih.gov/medlineplus/brainandnerves.html
- Cancers - http://www.nlm.nih.gov/medlineplus/cancers.html
- Genetics/Birth Defects - http://www.nlm.nih.gov/medlineplus/geneticsbirthdefects.html
The primary NIH organization for research on Neurofibromatosis is the National Institute of Neurological Disorders and Stroke - http://www.ninds.nih.gov/