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Name:Elaine My Interest in LHON is: Someone in my family has LHON I'm From: Qld, Australia Date & Time:15 Sep 97 03:42:45 BST My Comments / Information Thank-you for setting up this list. I am interested in hearing more about those anecdotal stories that doctors allude to regarding anitoxidants and sight return, as my 40 yr brother has been affected for over 10 years and I have 2 kids all of us with 100 % of mitochondria affected. I am also interested in hearing about tiredness, headaches, vagueness and other alternative treatments. |
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Name: June McEvoy My Interest in LHON is: Someone in my family has LHON I'm From: Millbrae, California Date & Time: 12 Sep 1997 22:55:26 GMT My Comments / Information My husband was just diagnosed with Leber's. He is 58. Started 14th February 1997 - first one eye and then the other. 5 doctors gave all kind of misinformation and no one knew what it was. Finally through the Internet I found a professor at U.C. who diagnosed him immediately. We need all the help we can get - thank you! |
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Name: Pamela My Interest in LHON is: My Son Has Leber's Hereditary optic Neuropathy I'm From: Monroe, Washington USA Date & Time: 24 Aug 97 00:09:40 BST My Comments / Information My 11 year old son was diagnosed with LHON last year. Things are looking up! He's doing really greath thanks to family support, a wonderful doctor, cousin that has LHON and new school where he will learn tools to help him with his education. |
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Name:Meghan Marsano My Interest in LHON is: Someone in my family has LHON I'm From: Pennsylvania, Maine, Michigan Date & Time: 20 Aug 97 18:31:55 BST My Comments / Information Thanks so much for setting this up. I'm amazed at the number of resourcess I'm finding. |
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Name:
Gordon My Interest in LHON is: I am affected by LHON I'm From England Date & Time 17 Aug 1997 17:42:51 GMT My Comments / Information Do you think "Mr. Magoo" is funny or offensive? Walt Disney Pictures are planning to make a movie of this bumbling blind cartoon character. Why not let them know your views - you can mail them by going to the Walt Disney Website |
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Name:Sumit My Interest in LHON is: I am a medical practitioner I'm From: Cambridge, England Date & Time: 13 Aug 1997 12:25:17 GMT My Comments / Information: I have seen an unfortunate girl in a recent clinic who has Leber's as well as phenylketonuria. As I'm not familiar with the condition I thought I'd check it out. Can anyone out there involved in research into possible treatments email me with the latest news (is it still Vit.B12 and antioxidants?). Grateful for any more info. |
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NameJim How I found this site: Just Surfed On In! I'm From: London, England Date & Time: 1997-08-10 22:03:00 My Comments / Information: There is a very good article on the mechanism and inheritance of mitochondrial disorders including LHON in the August 1997 issue of Scientific American. It is called MITOCHONDRIAL DNA IN AGING AND DISEASE by Douglas C. Wallace of Emory University, Atlanta, GA, USA. |
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Name: InTouch How I found this site: Word of Mouth I'm From: London Date & Time: 1997-08-05 20:09:00 My Comments / Information: BBC Radio 4 In Touch Programme. No, "In Touch" is not being axed, as "radio has a special relationship with visually impaired listeners". It will, however, be shortened to 20 minutes and will run from 8.40 - 9.00 pm on Tuesdays. If you want to write and complain, write to James Boyle, Controller Radio 4, BBC Broadcasting House, London W1A 1AA. |
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Name: John Glenn How I found this site: Just Surfed On In! I'm From: Bellingham, Washington, USA Date & Time: 1997-08-02 19:00:00 My Comments / Information: I appreciated seeing something on LHON. I work with VI students in educational situations, and LHON has been unfamiliar to me until this passed year. I would appreciate any information on recommendations of computers and various other technologies that persons with LHON use. Information on coping with life's twists and turns would also help me in understanding some of what I may help a student with as he meets barriers. What adaptations and changes have been made to cope with print reading impairments and life skills. |
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Name: Anne/Fred Diehl How I found this site: From Yahoo I'm From: Cornwall, New York Date & Time: 1997-08-01 17:57:00 My Comments / Information: Private |
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Name: Anne/Fred Diehl How I found this site: From Yahoo I'm From: Cornwall, New York Date & Time: 1997-08-01 17:05:00 My Comments / Information: Private |
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Name: RYAN R. How I found this site: Net Search I'm From: SOUTHERN CALIFORNIA, USA Date & Time: 1997-07-25 04:20:00 My Comments / Information: I am a 26 Year old male with Lebers who has also lived with the confusion of this disease. Perfect vision until I was 18, first left eye, then right eye, over a 7 month span. I was considered "Legally Blind." After 5+ doctors locally, I was finally 'diagnosed' at UCLA Medical Center. I am very fortunate to have regained my vision over the past 8 years. I attribute all to positive thinking and living healthy. |
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Name: Paulo Roberto Celidonio Caroli How I found this site: From AltaVista I'm From: Brazil Date & Time: 1997-07-11 23:07:00 My Comments / Information: I began with eyesight problems when 15. (am now 23); the doctors weren't sure about the diagnostic. My brother (26) is having the same problems that I had in the past; and now the doctors diagnosed my brother and I with Lebers Optic. I was graduated in Computer Engeneering last year and I am working in that and doing the Master in Computer Science; I have normal life, and I only use a magnification glass (very small) for reading books or the computer video; and I can drive too. I am affraid of my brother recuperation, because I think my recuperation was much better than the usual. If some one could give me some information about what can I do to help my brother I would be very glad for that. |
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Name: Anne/Fred Diehl How I found this site: From Yahoo I'm From: USA Date & Time: 1997-07-08 20:49:00 My Comments / Information: We have started an organization to help fund research, counselling, and other services for families afflicted with LHON. Please contact us with any information you think is useful. Thank you. |
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Name: jhall How I found this site: Just Surfed On In! I'm From: canada Date & Time: 1997-06-30 15:12:00 My Comments / Information: just surffing around getting ideas for a lebers site page for canada/us my site is http://granite.cyg.net/~jhall/lebers.html been woking in computer programming for almost 20 years noticed that most of the information is from europe most on this side of the ocean don't know about it or what to do i am 1 of about 30 in canada diag with it according to sick kids hospital in toronto (genetic section) most computer devices seem to be about 5yrs behind what i used to do any input would be appreciated thanks jeff |
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Name: alejandro wiater How I found this site: Just Surfed On In! I'm From: argentina Date & Time: 1997-06-29 20:33:00 My Comments / Information: please sende me information about leber's hereditary optic neuropathy 29/06/97 . 16:30 hs. |
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Name: Peter Martin How I found this site: Net Search I'm From: Bournemouth England Date & Time: 1997-06-25 11:38:00 My Comments / Information: Thousands of partially sighted people in the UK are benefiting from the greatly enlarged and clearer images made possible by our 'MegaVision' TV and computer magnification screens. Simple to install and from only UK£49.95 plus P&P E Mail us on ob60@dial.pipex.com and ask for a brochure and price list leaving name and address for same day dispatch |
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Name: David Bitting How I found this site: Just Surfed On In! I'm From: United States Date & Time: 1997-06-19 20:55:00 My Comments / Information: Was diagnosed with Lebers Optic when 18. (am now 34) Presently good computer equipment to aid visually impaired is rather expensive, but I get training at the Assn. for the Blind. I do have an E.V.A. which magnifies print, however it has been out of order for years. I stay very active: skiing, running, working(no kidding, as a meat processor) and also I split firewood. I enjoy football and watch with binoculars. I miss driving the most and some sports requiring good vision. To others out there with Lebers, I have been told my female offspring will not contract Lebers. Stay positive and pray for a cure. |
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Name: Sandhi Rushing How I found this site: Just Surfed On In! I'm From: N.C. Date & Time: 1997-06-08 20:26:00 My Comments / Information: I found your pages very interesting. My main interest in eye disorders is with Leber's amaurosis. |
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Name: Jim Leeder (the author) How I found this site: Author I'm From: London, UK Date & Time: 1997-06-08 12:32:00 My Comments / Information: Hi, I've just added this guestbook to the LHON Information site so you can add your own comments and information. Your comments will add to the value of the site for everyone. Other visitors to the site can see your contribution using the 'View the Guestbook' facility. You are also very welcome to join the LHON Mailing list which is an open discussion group on all matters relating to living with LHON. Regards, Jim |