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Leber’s Hereditary Optic Neuropathy

Disease Description:

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. While symptoms can begin at any age and in men or women, it is most common among men around age 20. Symptoms usually begin as painless blurriness in one eye quickly progressing to severe central vision loss, typically followed within a few months by similar symptoms in the second eye.

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 Research Project
Mood Study - Only For Those Affected

Provide valuable feedback about how being Affected by LHON has impacted your life. If you are Affected by LHON, please consider participating in this study.
This research project is being conducted by a Los Angeles-based group of LHON researchers.  It will look at the social and psychological dimensions of being affected by LHON.  This study will examine how LHON affects such factors as decision-making, social support and quality of life through an in-depth survey and an interactive graph.

Who can Participate?

 *   Anyone affected by LHON
 *   Any age, any location
 *   The LHON-affected person may have assistance from a sighted parent, friend, etc. in completing the survey and interactive graph
 *   LHON carriers may NOT participate in this study

To participate in this study, click here.

LHON Conference Calls

You can download our conference recordings below:

Download the May 2015 conference call (mp3)
Download the April 2015 conference call (mp3)
Download the March 2015 conference call (mp3)
Download the January 2015 conference call (mp3)
Download the December 2014 conference call (mp3)
Download the November 2014 conference call (mp3)
Download the October 2014 conference call (mp3)
Download the September 2014 conference call (mp3)

Consider making a donation to the UMDF LHON Project Fund for research, education and awareness projects.

Total Donations Made to Date : $0


To make your donation  Click Here to Donate!

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