1. Hawaiian island local becomes suddenly blind.
    Gino Guss Gino Guss United States says:
    February 5, 2013 at 12:12 AM

    I live in Honolulu and have LHON.  I was diagnosed 12 years ago and have a severe form which has taken most of my vision and produces other symptoms that mimic MS.  Being in a remote location, I have never met nor spoken with another LHON inflicted person.  I would be happy to correspond or speak with any others with this disease.

    Reply
    • idebenon therapy
      KESHAV YADAV KESHAV YADAV India says:
      February 23, 2013 at 1:16 AM

      I am 19 year old and live in delhi, india. I too have been diagnosed with LHON. I was diagnosed 8 months back. Since then my visison is also decreasing.....
      I am on idebenon therapy and have received  pulse therapy of steroids Two times....
      But still the vision is moving down...
      IF SOMEONE KNOW ANYTHING ABOUT THE TREATMENT THAT COULD HELP ME....
      SO PLEASE I REQUEST FOR YOUR HELPFUL COMMENTS WTH DUE REGARDS.....

      Reply
    • LHON group on Facebook
      Helena Lindemark Helena Lindemark Sweden says:
      October 9, 2013 at 6:39 PM

      Just wanted to let you know that there is a large Facebook group with people affected by LHON or carriers of the mutation. The group is called "Leber's Hereditary Optic Neuropathy (LHON) (BLIND)". There's also a good website with a lot of information: www.lhon.org, run by Lissa Poincenot, California, whose son has LHON since a couple of years ago.

      Reply
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