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Name:Juanita My Interest in LHON is: Someone in my family has LHON I'm From: Brampton, Ontario, Canada Date & Time:21 Mar 1998 05:11:24 GMT My Comments / Information My father and uncle have Leber's. If anyone has any information that would be helpful, I would appreciate a reply. Also, if anyone is aware of any way in which to help get back any sort of vision, that too would also be appreciated. Thanking you in advance. |
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Name:James Peach My Interest in LHON is: I am affected by LHON I'm From: Simcoe Ontario Canada Date & Time:18 Mar 1998 04:47:34 GMT My Comments / Information would like to be able to meet and discuss this condition with others that have it there is no one else in my area that has Lebers and information is hard to find Thanks James Peach |
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Name:Diego Gonzalez Ruano My Interest in LHON is: Someone in my family has Leber's Congenital Amaurosis I'm From: Palma de Mallorca (Spain) Date & Time:3 Mar 1998 16:26:21 GMT My Comments / Information Id like to receive some information about this. |
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Name:Aurlio Ventura My Interest in LHON is: I am a medical practitioner I'm From: Recife- Brazil Date & Time:28 Feb 1998 17:14:24 GMT My Comments / Information |
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Name:Margaret Kelly My Interest in LHON is: Someone in my family has LHON I'm From: Rosemeadow, Sydney. Australia. Date & Time:26 Feb 1998 10:53:44 GMT My Comments / Information There is quite a few in our family with Leber's Opticatrophy. Uncles brothers son and grandson. |
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Name:DON KELLY My Interest in LHON is: Someone in my family has LHON I'm From: CAMPBELLTOWN SYDNEY AUSTRALIA Date & Time:25 Feb 1998 18:43:25 GMT My Comments / Information I HAVE 2 BROTHER INLAWS ONE SON ONE GRANDSON IT HAS ALL COME FROM MY WIFES SIDE OF THE FAMILY. |
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Name:Chris Harthman My Interest in LHON is: Someone in my family has LHON I'm From: England Date & Time:23 Feb 1998 23:09:43 GMT My Comments / Information My wife has LHON and we are always on the lookout for further info. If anyone would like to get in touch my wife is always keen to talk to others with LHON. In the first instance please e-mail me. |
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Name:Cindy My Interest in LHON is: Someone in my family has LHON I'm From: Oswego, KS Date & Time:16 Feb 1998 19:58:07 GMT My Comments / Information Our son was just diagnosed with LHON. He is 19 and has lost the vision in his right eye. At the present time his left is about 20/50. Our older son also has shown signs of this disease, but to a much lesser degree. His vision was about 20/40 and 20/50 several years ago, and, if anything, he seems to have improved a little from that. Is it possible that he will experience more affects of this disease? If anyone has anything that they have found useful to slow down or halt the effects of this please e-mail us. Also I am interested to know what vocations are reasonable for people who suffer with LHON. |
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Name:Bob My Interest in LHON is: I am affected by LHON I'm From: TN,USA Date & Time:14 Feb 1998 22:36:55 GMT My Comments / Information My eyesight began deteriorating in 1997. Didn't get a proper diagnosis until I self diagnosed LHON in sometime early summer. Thank God for the Internet. Confermed it with a gene test and sure enought found two mutant genes. I'm finding it hard to find Hydroxycobalamin. Can anyone out there in cyberspace help me in locating a sourse for it and the proper dosage. |
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Name:Bonnie Esposito My Interest in LHON is: Someone in my family has LHON I'm From: Bronx, NY Date & Time:14 Feb 1998 21:18:23 GMT My Comments / Information Are there any support groups for Lebers in the NYC area? What type of employment is most feasible for sufferers? Is there any research going on for Lebers? |
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Name:Ed Sanders My Interest in LHON is: Someone in my family has LHON I'm From: Lancaster, NH, USA Date & Time:8 Feb 1998 04:21:26 GMT My Comments / Information Several of my cousins have Leber's. Fortunately I have a male in between me and a carrier. A doctor took up an interest in it in medical school and started a genealogy on a branch of my family which I am continuing. You can see part of it on my web site: http://www.edsanders.com |
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Name:Kylie My Interest in LHON is: Someone in my family has LHON I'm From: queensland Date & Time:25 Jan 1998 06:48:37 GMT My Comments / Information I have searched for information on LHON for years finding either brick walls or information which is difficult to understand. I am excited at the possibilities that this page opens up- thank you. |
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Name:diana torry My Interest in LHON is: Someone in my family has LHON I'm From: des moines, iowa Date & Time:19 Jan 98 21:02:12 GMT My Comments / Information |
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Name:Kathy McElhinny My Interest in LHON is: I have a different mitochondrial disease, along w/three kids I'm From: Melbourne, Florida Date & Time:17 Jan 1998 00:30:37 GMT My Comments / Information Jim, I saw your website info. on Mike Jackson's webpage. Our homepage is listed on the same page. You've done a wonderful job with this homepage: its easy to understand and very professional. God Bless you, kathy |
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Name:Bonnie Esposito My Interest in LHON is: Someone in my family has LHON I'm From: Bronx, NY Date & Time:11 Jan 1998 22:17:43 GMT My Comments / Information My 19 yr old son has been diagnosed with Lebers. It is and has been frustrating. It took 2 months for the DNA test results to get back to us. Now it's already been a month since we requested services from the NYS Comm on the visually handicapped and blind. I just want my son to be able to led as normal a life as possible - but the questions are will he be able to finish college? He was a communications/literature-with a minor in education major. He can't read or write - needless to say his vision field is quite limited. Right now we can't see the possibilities for him. I would appreciate any feedback from someone who has been through this. Thank you. |
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Name:Joshua Brown My Interest in LHON is: Someone in my family has LHON I'm From: Nashville, Tennessee Date & Time:21 Dec 97 01:37:16 GMT My Comments / Information I would like to know more about Leber's and be added to any mailing lists that are available. My younger brother has Leber's; he is 21. I am 24 and have the gene, but have not developed the disease. I am curious about what connection there may be between Leber's and heart problems (such as irregular heartbeats or arrythmia). I was recently hospitalized for chest pains and heart palpitations. A couple of doctors have told me that there is some genetic connection. |
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Name:regina silbert My Interest in LHON is: I work with Visually Impaired people I'm From: Portland, Oregon Date & Time:20 Dec 97 00:23:50 GMT My Comments / Information Jim--We were asked to check the web and find good information on Leber's Hereditary Optic Neuropathy by someone who was referred to my organization, Vision Northwest. We provide support services for people who are severely visually impaired and are trying to make the physical and emotional adjustments to vision loss. I think you have done an outstanding job of presenting relevant information in a clear and concise manner that is easily understood by people who are not medical practitioners. Keep up the good work! I'm impressed. Regina Silbert Executive Director, Vision Northwest 621 S.W. Alder, Suite 500 Portland, OR 97205 503-221-0705 |
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Name:Anne Diehl My Interest in LHON is: Someone in my family has LHON I'm From: Cornwall, New York Date & Time:16 Dec 97 18:23:46 GMT My Comments / Information Our son was diagnosed with LHON three years ago at age 25. He has had some visual recovery over the last three years. As a result of this condition, we have started a not for profit organization to assist families afflicted with optic nerve disease gain information, and hopefully, in the future, provide researchers with funding for research. Please contact us the e-mail address given. We would be very interested in speaking with anyone suffering from LHON, a family member, physicians, etc. |
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Name:Andy Barriault My Interest in LHON is: I am affected by LHON I'm From: subury ont. canada Date & Time:05 Dec 97 07:06:40 GMT My Comments / Information This is a great page!!! Thank you for the time and effort put into it. I have lebers 14484 (2 yrs now) and my vision has been getting better. I am confident that I am on my way to a full recovery. Positive thinking, supportive friends and family are the key. Never lose hope. For those of you who have recovered please tell me how long it took and what the extremes of youre condition were. thanx. |
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Name:Amy Gerson My Interest in LHON is: My husband has LHON I'm From: Boston, MA Date & Time:5 Dec 1997 01:11:59 GMT My Comments / Information My husband, Rob, lost his sight 3 years ago when he was 27. He sees a grey horizontal line through his field of vision. Peripherally he sees strong contrasts. The only color he sees are certain types of bright blues and purples, though they appear different to him than to me, i.e. a shirt that looks purple to me may look blue to him. The mutated gene is 11778. I understand that there is a 4% recovery rate for this gene. I am confused as to how this is possible since supposedly the optic nerve cells have died and nerve cells don't regenerate. Is it possible that other pathways are created? I'm very curious to hear the details of anyone who has recovered, especially with the gene 11778. Also, I have read about theories of stress sprurring the onset of the blindness. I wanted to write that Rob was under an extreme amount of stress when he lost his sight. Out of a scale of 1-10, he'd say 10. Also, I read someone experienced headaches and tiredness. Rob has ! always had a high incidence of both. This seems to make sense to me since the gene mutation deals with the energy making of the cells. I'm extremely grateful for this website and to be able to hear others experiences. I believe Rob will one day be able to see my face and our future children. |