View previous 20 entries
| Return to LHON Home Page | |
| Please add your own comments/information | |
| View previous 20 entries |
View next 20 entries |
|
Name:kellie My Interest in LHON is: Someone in my family has LHON I'm From: Pennsylvania Date & Time:8 Oct 1998 19:41:26 GMT My Comments / Information My husband was diagnosed with LHON about 10 years ago and I find very helpful and interesting to read all the information on LHON. I would love to hear of any new research or information. |
|
Name:Tracey My Interest in LHON is: Graduate Student I'm From: Kenosha, WI Date & Time:16 Sep 1998 02:12:50 GMT My Comments / Information I am a graduate student at Northwestern University and writing my master's thesis on LHON. I appreciate the opportunity to read about day-to-day life with LHON as reading journal articles on LHON does not provide any information on this important perspective. Thanks and keep up the good work. |
|
Name:Cindy My Interest in LHON is: Someone in my family has LHON I'm From: Wisconsin USA Date & Time:16 Aug 1998 02:25:00 GMT My Comments / Information My husband has Lebers since the age of 32. He has had the disease for 10 years and his vision has not changed. I was interested in reading the information on Lebers. My daughter was also interested in the hereditary aspects of Lebers. If anyone has any new information please e- mail me. Thanks. |
|
Name:Cindy My Interest in LHON is: Someone in my family has LHON I'm From: Wisconsin USA Date & Time:16 Aug 1998 02:11:01 GMT My Comments / Information My husband developed Lebers at the age of 33. He has lived with this for 10 years now and has never changed. I enjoyed reading about the disease and people's experience with Lebers. My daughter also was interested in the hereditary aspects of Lebers. |
|
Name:Tammy My Interest in LHON is: Someone in my family has LHON I'm From: Connecticut Date & Time:7 Aug 1998 20:38:13 GMT My Comments / Information Any information on lebers would be appreciated. Also any type of medications that may be helpful. Any other things to avoid I know to avoid alcohol and cigarettes. thank you, Tammy |
|
Name:Tammy My Interest in LHON is: I'm From: Conneticut Date & Time:6 Aug 1998 01:39:29 GMT My Comments / Information My husband has been diagonised with leber disease. Any information on this would be appreciated. We are told to take coenzyme q10. Is it possible to have at least some vision returned? Currently the left eye is effected, the right eye has just started. It took over six months to find this. Thanks for any info or help. |
|
Name:vince isaacson My Interest in LHON is: I am affected by LHON I'm From: Quesnel BC, Canada Date & Time:29 Jul 1998 01:01:49 GMT My Comments / Information Just wrote to say Hi. I wonder If you heard about the the headgear that can be worn to improve vision. I've been tol it's like looking at a 60 inch tv screen . Then the image can be manipulated to the weare's choice |
|
Name:michele My Interest in LHON is: Someone I know has LHON I'm From: Wichita, Kansas USA Date & Time:13 Jul 1998 22:56:41 GMT My Comments / Information Thanks for the information. I would also like to know more about expiramental treatment. thanks |
|
Name:JOHN PLUNKETT My Interest in LHON is: I HAVE NAION I'm From: US Date & Time:11 Jul 98 05:04:09 GMT My Comments / Information LATEST TREATMENTS AND DOES MIDOXIDIL 5% AT NIGHT CONTRIBUTE TO THIS PROBLEM |
|
Name:Michael Garrison My Interest in LHON is: Curiosity I'm From: Massachusetts Date & Time:10 Jul 1998 02:55:29 GMT My Comments / Information I did a paper in college on genetics. Of particular interest to me, was the fact that LHON can only be passed from mother to offspring, due to a defect in the DNA contained in the mitochondria of the ovum. Might this level of detail be of interest to your other visitors, or simply a confusion factor? Regards, m. |
|
Name:Marc Rossi My Interest in LHON is: I am affected by LHON I'm From: New Jersey, USA Date & Time:9 Jul 1998 00:36:30 GMT My Comments / Information I have been affected since 1989. I am 27 years old but I have regained alot of my sight back since then. Please keep me updated on any new discoveries or info. on this. |
|
Name:Paolo Romano My Interest in LHON is: I am involved in research into LHON I'm From: Rome (Italy) Date & Time:6 Jul 1998 13:46:18 GMT My Comments / Information I feel fear about it. I don't want become blind. I have already multiple sclerosis |
|
Name:Mary My Interest in LHON is: Someone I know has LHON I'm From: Decatur, IL Date & Time:26 Jun 1998 02:34:06 GMT My Comments / Information My boyfriend has optic atrophy, but Illinois has a law that allows him to drive with telescopic lenses. I'm looking for a list of other states that will allow him to drive, too (in case he doesn't want to live in Illinois forever!). Any suggestions or leads would be greatly appreciated. Thanks! |
|
Name:Jason Hutton My Interest in LHON is: I am affected by LHON I'm From: Indiana Date & Time:29 May 98 06:33:04 GMT My Comments / Information I think that this is a great site and LHON awareness can grow through the internet. Thank you and maybe we can make a LHON webring or something! |
|
Name:tony ferguson My Interest in LHON is: Someone I know has LHON I'm From: edinburgh Date & Time:11 May 1998 23:53:50 GMT My Comments / Information hi there, my best friend mike has leber's and he never knew, nor did i, that there was such a wealth of info on the web! we tried searching before, but he gave me the wrong spelling!! |
|
Name:T. Carnevale My Interest in LHON is: Diagnosed when I was 21, now 35. I'm From: Toronto, Ontario, Canada Date & Time:9 May 1998 02:08:29 GMT My Comments / Information Thanks for setting up this web site! I am one of the lucky ones who has had a successful recovery. However, I am left with some minor visual problems. I came to this site out of concern for my sisters sons in an attempt to get more information. I suffered with this disease for over a year and I know the impact it can have on one's life. My thoughts and prayers are with all of you. |
|
Name:Kenna Thiriot My Interest in LHON is: Someone I know has LHON I'm From: Salt Lake City, Utah Date & Time:24 Apr 1998 00:32:39 GMT My Comments / Information A friend at work has been diagnosed as having this and I am trying to find out if there is any hope for increased vision |
|
Name:Jose Revilla My Interest in LHON is: Someone in my family has LHON I'm From: Peru Date & Time:16 Apr 1998 18:21:00 GMT My Comments / Information My older son has this disease five months ago. He was declared legally blind. I am interesting on information related to school study. Specifcally, tools to write normal and braillie, to read braillie, to handle computers, recorded books, printers capable to print normal and braillie, some devices that let him use his periferal vision. In general, anything that can be useful to get in the future a profesional like the best. I think, while we wait good news to fight this disease, we can interchange information about how can we improve the quality of life all of them.. |
|
Name:Dr Meredith Wilson My Interest in LHON is: I am a medical practitioner I'm From: Sydney, Australia Date & Time:29 Mar 1998 00:56:55 GMT My Comments / Information I thought the information section was one of the best-produced summaries of LHON I have evere seen; accurate medically, good explanations, and good graphics. I'll definitely plagiarise it for student lectures (if that's OK!)and will refer my patients to this site for reliable information. |
|
Name:richard My Interest in LHON is: I am affected by LHON I'm From: infoseek Date & Time:28 Mar 1998 09:46:17 GMT My Comments / Information I am a 26 year old male, I have had LHON for eight years now. I was diagnosed while I was in the Air Force. The hope for a cure is still with me almost every day but I try not to let it get me down. The things I miss are driving and looking at the mountains. I am currentlly a senior seeking a B.S. in business at the University of Colorado. My main goal is concentrate on the remaining vision that I still have and to be gratefull while still holding hope for a cure. Good luck to those of us who have it, and remember it's not what you don't have it's what you can use to the greatest advantage |
|
Name:Josh Ketry My Interest in LHON is: Someone I know has LHON I'm From: Buffalo NY Date & Time:25 Mar 1998 22:02:48 GMT My Comments / Information There might be a possibilty that my friend was mis diagnosed. I would like your opinion. Your symptoms and descriptions don't seem to follow his. Thank you. |
|
Name:Amanda Scott My Interest in LHON is: Someone I know has LHON I'm From: Lancashire, England Date & Time:23 Mar 98 09:36:53 GMT My Comments / Information Dominic age now 22 years received a savage head butt by a policeman 6ft, 4ins, 18stone. Unconscious for 2-3mins, incident shown on cct camera. Policeman found guilty March 1997. Dominic began to loose sight in both eyes June 1997. Only 10% of normal vision, July admitted to hospital. Electro tests showed interference from brain re optic nerve. Nov 3rd diagnosed as having 'Leber's Hereditary Optic Neuropathy. No known history in family. Read from internet about genetics being triggered by shock or trauma, eg head butt. Does anyone have any further information or would anyone be willing to back this up in writing. Thank you |