Discussions By Condition: Eye conditions

Is there anyone out there familiar with Leber's

Posted In: Eye conditions 6 Replies
  • Posted By: Anonymous
  • July 11, 2006
  • 05:55 PM

My son was diagnosed with Leber's Hereditary Optic Neuropathy in May of this year. He was born on May 23, 1989 and is 17. He first noticed a vision loss in January of this year. We took him to an eye doctor because we thought he may need glasses and found this wasn't the case. He had a brain MRI which was normal. The eye doctor sent him to a neurologist. The neurologist had a VER done and also sent him for weekly vitamin injections for a month at a hospital. He also saw an Optic Neurologist in Boston who had blood drawn to be sent out for Leber's. It was positive. I am looking for other's who have Leber's or whose sons, daughter, anyone has Leber's. I need to know if they are doing any research on this for a cure?

Thank you.

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6 Replies:

  • I was diagnosed with LHON last year at age 32. Feel free to email me at vbsc@engineer.com and I can tell you what I have learned.
    Anonymous 42789 Replies
    • August 29, 2006
    • 01:57 PM
    • 0
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  • I'm the mother of a 19 year old son from Michigan. We are all trying to keep him in college despite the loss coming right on at the start of school this fall. Since the other eye is not completely done, we are wondering about treatments that you may have found out about. So far we are having trouble finding care while trying certain supplements or B12 shots, etc. Also, what about the genetics for his two sisters getting the symptoms? Is there anything that would conclusively tell about their chances? Thank you!
    suzanne 1 Replies
    • October 3, 2006
    • 02:12 AM
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  • My son was diagnosed with Leber's Hereditary Optic Neuropathy in May of this year. He was born on May 23, 1989 and is 17. He first noticed a vision loss in January of this year. We took him to an eye doctor because we thought he may need glasses and found this wasn't the case. He had a brain MRI which was normal. The eye doctor sent him to a neurologist. The neurologist had a VER done and also sent him for weekly vitamin injections for a month at a hospital. He also saw an Optic Neurologist in Boston who had blood drawn to be sent out for Leber's. It was positive. I am looking for other's who have Leber's or whose sons, daughter, anyone has Leber's. I need to know if they are doing any research on this for a cure? Thank you. My Daughter Nicole has Lebers. She will be 30 this month. We are going to Miami in a few weeks as a part of a new genetic study. Please email me at JVisnic@cfl.rr.com and I will tell you all that I know. She has had it for 2 1/2 years.....Judy
    JudyVisnic 2 Replies Flag this Response
  • My Daughter has Lebers and we have been called for a clincal gentic study Please email me if you would like more details. JVisnic@cfl.rr.com. Thank you...Judy
    JudyVisnic 2 Replies Flag this Response
  • Hi Maureen, This is from India. I have LHON and was affected in both eyes about 8 years back (at the age of 18). And so did my mother and two of her sisters and their maternal uncle. All of us have recovered from the acute state (I was OK in about a year), and all of us are leading normal lives, even though acuity and night vision is a problem. There is no known treatment, though I believe the situation gets better within some months of the acute state (This has been true for all of us affected in my family). The main problem is the trauma of becoming blind slowly, and not knowing whether one will recover. Friends and family support matter a great deal in this phase. I have gone through this pain!! Just wanted to share that I wear no glasses, vision is almost 6/6 and I am allowed to drive as of today.As far as treatment is concerned, we have tried everything. Modern medicine gave me B-complex and steroid shots. Homeopathy did not result in any change. The most effective was Ayurveda (Indian natural medicine therapy). Ayurvedic treatment was a great comfort, and I had my treatment in very modern Ayuvedic eye speciality hospital in South India. But needless to say, I cannot say for sure whether Ayurvedic treatment will cure it, but for sure, I believe it was becuase of this that I have better acuity.One more thing that we tried was Reiki (we were really desperate to get my vision back :-)). Very very surprisingly, after Reiki application we have found that the central scrotoma lightens and gets cleared from the peripheral. We actually recorded this change as we were very surprised. But the effect used to wear off after some time.All these experiments with medicines (at times very adventurous and funny- we once met a black magician on a train who promised to take of the curse of blindness off my head!!!) not withstanding, the actual result has been the strengthening of love and bond, between members of my family and my friends. best wishes.Ashwin(as.ashwin@gmail.com)
    ashyashwin 1 Replies Flag this Response
  • Hi there My daughter Amanda was diagnosed 3 years ago at the age of 7yrs 8 monthsWe are part of the gene replacement therapy trial at Bascom Palmer Eye Institute in MiamiThe are working on a cure for LHON gene marker 11778It is very traumatic at first however we are thankful for all the science and technology available todayther is a yahoo group for LHON also that post s improtant infoJustine LennonNew york
    Anonymous 42789 Replies
    • August 10, 2010
    • 00:52 AM
    • 0
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