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:
UCLA Doheny Eye Center - Pasadena, CA
Emory Eye Center - Atlanta, GA
Wills Eye Hospital - Philadelphia, PA
University of Colorado - Aurora, CO
Stanford Byers Eye Institute - Palo Alto, CA
Outside the U.S., some of the leading LHON researchers and clinicians are at:
University of Ottawa Eye Institute - Ottawa, Canada
Moorfields Eye Hospital - London, UK
University of Bologna - Bologna, Italy
University of Munich - Munich, Germany
Hôpital Fondation Adolphe de Rothschild - Paris, France
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 at the Register tab or by joining a local Facebook group and requesting suggestions.
Directory of Neuro-Ophthalmologists
To see a LHON specialist when travel costs are prohibitive, consider an organization 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, 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 OCT (Optical Coherence Tomography), which measures the thickness of each part of the optic nerve. The optic nerve becomes unusually thick in specific areas at onset of vision loss as some of the optic nerve fibers are swollen, then the fibers atrophy and the optic nerve becomes unusually thin.
Understanding LHON Vision Tests
Most LHON experts suggest that people carrying an LHON mutation, both affected and unaffected carriers, avoid environmental factors that could create additional mitochondrial stress including:
Smoke (all forms - tobacco, wood stoves, bonfires, wildfires, chemical factory fires, etc.)
Vaping
Alcohol
Antimicrobials/Antibiotics:-Erythromycin
-Ethambutol
-Linezolid
-Chloramphenicol
-Aminoglycosides-Tetracyclines
Hyperbaric Oxygen
Quaternary Ammonium Compounds
Ringer's lactate
Having a discussion with your own LHON medical professional about these factors that are discussed in this article is encouraged. Any individual who is affected by LHON or is likely to carry a LHON mutation and smokes anything would be wise to stop immediately to reduce risk of harm. A smoking cessation program may be helpful in achieving that goal.
Toxic Medications in Leber's Hereditary Optic Neuropathy
Research suggests that estrogen may protect women who carry an LHON mutation. Women who carry an LHON mutation, affected and unaffected, may wish to share this article with their health care providers and discuss its implications for them. LHON and Estrogen-article LHON and Estrogen-video
Some research indicates that some individuals with an LHON mutation may be more likely to have low B12 than the general population, so it may be helpful to share the information in this handout with one's physician.
Some individuals with LHON vision loss experience a phenomenon known as Charles Bonnet Syndrome, where they see phantom images. Information about it is in this video and handout.
LHON & Charles Bonnet Syndrome - Video
Charles Bonnet Syndrome - Handout
Many experience photophobia/sensitivity to light and glare. Specialized glasses such as these may be used indoors to limit the impact.
Some individuals experience a worsening of vision during exercise and in heat. This is temporary, and is commonly known as Uhthoff Phenomenon.
It's important for individuals with LHON vision loss to continue having regular eye exams over time. Other eye conditions may develop in those affected by LHON just as in others, and losing any of the vision that remains after LHON onset can be devastating. Treatment for glaucoma or other eye conditions is available if detected early, so regular eye exams are important.
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