Tune in this week to see Leber’s Hereditary Optic Neuropathy (LHON), a rare genetic disorder that causes sudden legal blindness, featured among the rare diseases on this Friday, Feb. 7 episode of ABC 20/20. The episode will air at 10pm.

Unable to catch the episode live? You can see the segment posted on the ABC 20/20 website individually for a week at:

Then the full episode called “My Strange Affliction” should be accessible on the Full Episodes page:

The show will explore how LHON changed one person’s life, and the emotional impact on his maternal family members who could also lose vision due to this mitochondrial disorder.

Want more information on LHON? Visit www.LHON.org.

Jeremy Poincenot, who will be featured in the ABC 20/20 broadcast is a professional Inspirational Speaker, sharing insights about how to become more resilient in the face of adversity:

5 thoughts on “Leber’s Hereditary Optic Neuropathy to Showcase on ABC’s 20/20 Segment “My Strange Affliction””

  1. Lisa says:

    Please watch this episode of 20 / 20 to learn about a mitochondrial disease (LHON) that can affect vision. Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.

    Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.

    Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection. ( more information http://www.umdf.org)

    Please Consider donating to mitochondrial disease research and LHON (lebers hereditary optic neuropathy) here: https://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.8046977/k.BA93/LHON.htm

    You can learn more about LHON at : https://www.lhon.org/lhon/LHON.html

  2. Daniel Kramer says:

    Hi I just finished watching the show it was really interesting but I think ABC 20/20 skimmed over some other rare eye disease . I am 16 I have FEVR a very rare eye disease I do not see the discussion of my disease rather two people getting the spotlight for the same disease. With my disease it doesn’t only cause sudden blindness rather it destroys my vision uncontrollable. I recently had a surgery to reattach my retina because of the blood vessel’s this disease causes. And they had to connect it back. I just really like the program ad enjoy it but maybe you could add more that one rare eye disease . Because I feel rare and

  3. Angeline says:

    Thanks Lissa for all your support

  4. kellie Ross says:

    I have a similar story to the ones featured on 20/20 tonight. When I was 17 I started to notice I couldnt see things that I normally could. My parents took me to an optometrist who told me there was something wrong with my retinas but wasnt sure what it was. Over the next year my vision became progressively worse but doctor after doctor and test after test could not figure out why it was happening. Finally a retinal specialist told us that the cells on my retinas that made up central vision were dying and there was nothing that could be done to fix it. I was going to eventually be completely blind. I am now 41 and still have no idea what to call my vision affliction. I also use my peripheral vision to see straight ahead and have managed to get around without use of a cane all these years. I have always wondered exactly what was wrong with my eyes and if there was anyone who could help me. Wayching the story on 20/20 made me cry because I know what it feels like to be so young and have to find a way to deal the fact that your whole life is being turned upside down and any dreams you may have had for your future are gone.

  5. Mo says:

    Extremely interested. My boyfriend definitely has an optic neuropathy disease. I am newly obsessed with learning more about this underplayed phenomena. The current news episode gave great hope. Maureen at: moremaureen@mail.com.

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