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Leber Hereditary Optic Neuropathy

National Organization for Rare Disorders, Inc.

Important

It is possible that the main title of the report Leber Hereditary Optic Neuropathy is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.

Synonyms

  • Leber's optic atrophy
  • Leber's optic neuropathy
  • LHON

Disorder Subdivisions

  • None

General Discussion

Leber hereditary optic neuropathy (LHON) is mainly characterized by bilateral, painless subacute loss of central vision during young adult life. In most cases, symptoms begin with one eye first, followed a few weeks later by visual failure in the other eye. Extremely rarely there may be neurologic abnormalities, such as peripheral neuropathy, postural tremor, nonspecific myopathy, and movement disorders. LHON is caused by mutations in mitochondrial DNA and it is transmitted by maternal inheritance. LHON affects approximately 1:50,000 people. Many carriers never suffer significant visual loss; males are about four to five times more likely than females to be affected.

Resources

Lighthouse International

111 E 59th St

New York, NY 10022-1202

Tel: (800)829-0500

Email: info@lighthouse.org

Internet: http://www.lighthouse.org



United Mitochondrial Disease Foundation

8085 Saltsburg Road Suite 201

Pittsburgh, PA 15239

United States

Tel: (412)793-8077

Fax: (412)793-6477

Tel: (888)317-8633

Email: info@umdf.org

Internet: http://www.umdf.org



National Association for Parents of Children with Visual Impairments (NAPVI)

P.O. Box 317

Watertown, MA 02272-0317

Tel: (617)972-7441

Fax: (617)972-7444

Tel: (800)562-6265

Email: napvi@perkins.org

Internet: http://www.napvi.org



National Federation of the Blind

200 East Wells Street

at Jernigan Place

Baltimore, MD 21230

USA

Tel: (410)659-9314

Fax: (410)685-5653

Email: nfb@nfb.org

Internet: http://www.nfb.org



American Foundation for the Blind

2 Penn Plaza

Suite 1102

New York, NY 10121

Tel: (212)502-7600

Fax: (888)545-8331

Tel: (800)232-5463

TDD: (212)502-7662

Email: afbinfo@afb.net

Internet: http://www.afb.org



American Council of the Blind

2200 Wilson Boulevard

Suite 650

Arlington, VA 22201

Tel: (202)467-5081

Fax: (202)465-5085

Tel: (800)424-8666

Email: mailman@acb.org

Internet: http://www.acb.org/



Guiding Eyes for the Blind, Inc.

611 Granite Springs Road

Yorktown Heights, NY 10598

Tel: (914)245-4024

Fax: (914)245-1609

Tel: (800)942-0149

Email: webmaster@guidingeyes.org

Internet: http://www.guidingeyes.org



NIH/National Eye Institute

31 Center Dr

MSC 2510

Bethesda, MD 20892-2510

United States

Tel: (301)496-5248

Fax: (301)402-1065

Email: 2020@nei.nih.gov

Internet: http://www.nei.nih.gov/



Blind Children's Center

4120 Marathon Street

Los Angeles, CA 90029-3584

USA

Tel: (323)664-2153

Fax: (323)665-3828

Tel: (800)222-3566

Email: info@blindchildrenscenter.org

Internet: http://www.blindchildrenscenter.org



International Foundation for Optic Nerve Disease (IFOND)

PO Box 777

Cornwall, NY 12518

USA

Tel: (845)534-7250

Fax: (845)534-7250

Email: ifond@aol.com

Internet: http://www.ifond.org/



MD Support - The Eyes of the Macular Degeneration Community

3600 Blue Ridge Blvd

Grandview, MO 64030

USA

Tel: (816)761-7080

Fax: (816)761-7080

Email: director@mdsupport.org

Internet: http://www.mdsupport.org



Genetic and Rare Diseases (GARD) Information Center

PO Box 8126

Gaithersburg, MD 20898-8126

Tel: (301)251-4925

Fax: (301)251-4911

Tel: (888)205-2311

TDD: (888)205-3223

Internet: http://rarediseases.info.nih.gov/GARD/



MitoAction

14 Pembroke Street

Medford, MA 02155

Tel: (888)648-6228

Fax: (888)648-6228

Email: info@mitoaction.org

Internet: http://www.MitoAction.org



National Ophthalmic Genotyping and Phenotyping (eyeGENE®)

National Institutes of Health/National Eye Institute

10 Center Drive, Room 10N226

Bethesda, MD 20892-1860

Tel: (301)435-3032

Fax: (301)480-3787

Email: eyegeneinfo@nei.nih.gov

Internet: http://www.nei.nih.gov/resources/eyegene.asp



For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders (NORD). A copy of the complete report can be downloaded free from the NORD website for registered users. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational therapies (if available), and references from medical literature. For a full-text version of this topic, go to MyD-H, the Dartmouth-Hitchcock patient portal. You must be a registered MyD-H user for the Lebanon, Manchester, or Nashua locations to access this site.

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.

It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report

This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.

For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email orphan@rarediseases.org

Last Updated:  1/15/2013

Copyright  1988, 1989, 1994, 1995, 1997, 2005, 2013 National Organization for Rare Disorders, Inc.

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