Leber’s Hereditary Optic Neuropathy

Leber’s Hereditary Optic Neuropathy, also called LHON or Leber’s (LAY-bers), is a rare condition which can cause sudden, profound, painless loss of central vision.  Symptoms can begin at any age, in men and in women.  While men’s onset of vision loss peaks at ages 14-26, there is no such peak in women, and LHON onset has been reported as young as age 1 and as old as age 87.

LHON is an extremely rare genetic disorder that is passed through the egg cell of the mother. While men cannot pass LHON on to their children,  women carrying a LHON genetic mutation will pass it on to all of her children. These mutations can lead to the reduction in cellular energy production, which in turn results in cell damage and death of certain optic nerve cells. At this time, experts are unable to tell which, if any family members will develop symptoms, though on average 50% of men and 15% of women with a LHON mutation will lose vision in their lifetime.

LHON Related Websites

LHON Clinical Trials & Studies

Safety Study of an Adeno-associated Virus Vector for Gene Therapy of Leber’s Hereditary Optic Neuropathy (LHON)
National Eye Institute- Dr. John Guy
For information, click here.
For additional background on this study, click here.

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Lissa’s son Jeremy was diagnosed with LHON in 2009. As the UMDF’s LHON Ambassador, Lissa helps connect the LHON community to resources, information and most of all, hope.

Lissa and her husband Lionel have two other children, Julie and Eric.