Leber's Hereditary Optic Neuropathy lhon.info



Leber's Hereditary Optic Neuropathy





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Leber's Hereditary Optic Neuropathy


Welcome to lhon.info

This site has been created to provide a DATABASE about LHON and information regarding Leber's Hereditary Optic Neuropathy.

The site is not intended to replace the main LHON websites listed and linked below.

Annual LHON Symposium
June 30, 2017

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Leber's hereditary optic neuropathy (LHON) is a mitochondrial inherited form of vision loss. Although this condition usually begins in a person's teens or twenties, it may appear in early childhood or later in adulthood. For unknown reasons, males are affected more often than females.

Blurring and clouding of central vision are usually the first symptoms of this disorder. These vision problems may begin in one eye or simultaneously in both eyes; if vision loss starts in one eye, the other eye is usually affected within several weeks or months. Over time, central vision in both eyes worsens with a severe loss of sharpness (visual acuity) and often affects colour vision. This condition mainly affects central vision and good peripheral vision usually remains to varying extents.  The loss of central vision creates difficulties for detailed tasks such as reading, driving, and recognizing faces.  Vision loss results from the death of retinal ganglion cells in the nerves that relay visual information from the eyes to the brain. Although central vision gradually improves in a small percentage of cases, in most cases the vision loss is profound and permanent and those affected are legally blind.

Painless central vision loss of is typically the only symptom of Leber's hereditary optic neuropathy; however, some families with other signs and symptoms have been reported.

Please take the time to complete our database if you are affected or you can fill in the database for an affected family member, loved one or friend.

And visit some of the websites below or on our links page to find out more about Leber's Hereditary Optic Neuropathy.


Patient Booklet

A simple and concise pamphlet about LHON by Jim Leeder

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Valerie Byrne Rudisill

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Explaining LHON (Leber's hereditary optic neuropathy)

There are many medical challenges people face that are immediately understood by the general public. When the diagnosis is cancer or Alzheimer’s, for example, people generally have a sense of the situation. LHON is different—most people you speak with will have no reason to know what LHON is. They’ll never have heard of mitochondrial disease. And most will have had no real contact with anyone who is legally blind. Often blindness is perceived as an all-or-nothing condition, so those with LHON find themselves explaining again and again what they can and can’t see, and how they’ve lost central vision but can get around using peripheral vision. Often times people know someone with macular degeneration, and while macular degeneration is a retinal disorder which tends to onset late in life unlike LHON which is an optic nerve disease which tends to onset in young adults, the impact on vision is similar in both cases.

People often ask if you can have an operation to “fix” the eyes, or to have an eye transplant. It’s helpful to explain that there are 3 key aspects to vision: the eyes, the brain, and the optic nerve. With LHON the eyes and the brain function just fine. What’s not working is the optic nerve which functions similarly to a wire that transmits information from the eye to the brain and back. With LHON the cells in the optic nerve are overdoing it on apoptosis—preprogrammed cell death—too many cells are committing suicide, causing the optic nerve to atrophy. It’s like a TV cord that’s been chewed by a mouse. Since optic nerve cells can’t regenerate, the ‘cord’ can’t be fixed (though some with LHON are fortunate in that their optic nerve cells don’t die, they’re just sick, hence there can be spontaneous recovery in some cases).

Someone with LHON may not “look blind,” and if they don’t use a cane or a guide dog, people may not understand their problems. When people walk by and the person with LHON vision “ignores them,” or doesn’t say hi back because they can’t see the person who said “hello”, it’s awkward for everyone. Teaching friends to say “hi, this is so-and-so” upon approaching someone with LHON vision, and encouraging other friends ‘in the know’ to tell the LHON vision person when someone they know is approaching, can be a big help in overcoming this awkwardness.

Since those with LHON vision usually have some peripheral vision, they tend to use that peripheral vision to see. They may look straight ahead so that others don’t find their gaze disconcerting, yet will look upward or to the side to really see.
In social situations with strangers one cannot choose who to talk to, let alone make eye contact or ‘read’ another person’s facial expressions. This can cause a sense of apprehension or unease in social situations and the more that friends can help out, the better.


(Source Unknown)


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