Patient Care
It’s helpful to find a medical professional who is aware of the most current research about LHON. The condition is so rare that most medical professionals are not up-to-date on recent developments. Leading centers for LHON research and patient care in the U.S. include:
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Duke University Eye Center - Durham, NC
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Emory Eye Center - Atlanta, GA
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Stanford Byers Eye Institute - Palo Alto, CA
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UCLA Doheny Eye Center - Pasadena, CA
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University of Colorado - Aurora, CO
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Wills Eye Hospital - Philadelphia, PA
Outside the U.S., some of the leading LHON researchers and clinicians are at:
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Hôpital Fondation Adolphe de Rothschild - Paris, France
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Moorfields Eye Hospital - London, UK
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University of Bologna - Bologna, Italy
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University of Munich - Munich, Germany
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University of Ottawa Eye Institute - Ottawa, Canada
Most neuro-ophthalmologists have some experience with and knowledge of LHON, and you can locate one near you with this directory of NANOS (North American Neuro-Ophthalmology Society) members. Information about various neuro-ophthalmologists can be obtained by asking a question in the Comments or Questions section of the Contact Registration page or by joining a local Facebook group and requesting suggestions.
To see an LHON specialist when travel costs are prohibitive, consider an organization such as Miracle Flights that offers free flights to those with a medical need.
Some of the tests used to assess those with LHON are discussed in the Understanding LHON Vision Tests video. One is a Visual Field Test (VFT), which tests where your eye can and cannot see within the visual field. Those with LHON tend to have a central scotoma, which is a blurry area in the center of the visual field. Another is an Optical Coherence Tomography (OCT), which measures the thickness of each part of the optic nerve. The optic nerve becomes unusually thick in specific areas at the onset of vision loss, as some of the optic nerve fibers are swollen, then the fibers atrophy, and the optic nerve becomes unusually thin.
Results from a visual field test that has a large scotoma in the left eye and a small scotoma beginning in the right eye.
