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Name:Belinda J Hill My Interest in LHON is: Someone in my family has LHON I'm From: Charleston, WV Date & Time:29 Nov 97 17:11:26 GMT My Comments / Information My 16 yr old son was diagnosed with LHON 6/93. He is at Sr. in College. He is not able to read except with a 15 - 22 x magnifier so most reading is on tape. My sister was diagnosed with Leber's in summer of 94. She cannot see 4' in front of her. There is a remarkable difference in both of their visions. These are the only known cases in our family. I would be interested in hearing more from others that are affected. My son is looking for a Grad School and my sister is no longer working. I keep praying for a cure! bj |
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Name:Saverio Sears My Interest in LHON is: we research alternative threatments with natural products I'm From: Denmark Date & Time:27 Nov 97 19:25:19 GMT My Comments / Information Have you any record / abstracts with regard to the eventually positive effect of coenzyme q10 in mithocondrion disorders ? I would very much appreciate your help. Thanks |
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Name:Amy Black My Interest in LHON is: I have congenital optic attrophy I'm From: Springfield, Ohio Date & Time:26 Nov 97 03:14:55 GMT My Comments / Information I am a 25yr. old female & I have Congenital Optic Attrophy. I am just curious if there are any new studies on this dissorder? |
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Name:paparelli , cassius marcel strufaldi My Interest in LHON is: diagnosis,and revision about this patology I'm From: brazil Date & Time:25 Nov 97 22:00:15 GMT My Comments / Information im a m.d. in brasil , and i need information about diagnosis and clinic , i probaly have a pacient with lhon . thank you |
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Name:Becky My Interest in LHON is: Someone in my family has LHON I'm From: Littleton, CO, USA Date & Time:25 Nov 97 05:20:36 GMT My Comments / Information My 12-year old son was diagnosed with LHON today. From all I've read on the internet, his symptoms are textbook and progressing exactly as it's written. I am very encouraged by the few comments in this section about regaining vision and the number of those who are actively dealing with this disease. We're only a few months into this and don't know where it will stabilize. Any info would be greatly appreciated. |
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Name: erika j wagner My Interest in LHON is: Someone in my family has LHON interested in optic neuropathy I'm From: wauwatosa wisconsin Date & Time:21 Nov 1997 14:53:03 GMT My Comments / Information |
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Name:murray ruben My Interest in LHON is: I'm From: toronto Date & Time:21 Nov 97 05:17:36 GMT My Comments / Information I am 39 years old, have had optic atrophe in both eyes from birth and was diagnosed with the new DNA test as having LOHN. I would like to hear from others who have experienced changes in their condition - either for better or worse. |
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Name:Jason Brookshire My Interest in LHON is: I am affected by LHON I'm From: Demorest, GA Date & Time:17 Nov 1997 00:40:58 GMT My Comments / Information What's the latest on this research? I understand there is no cure. |
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Name:Jeff Skidmore My Interest in LHON is: My girlfriend has LHON I'm From: Pennsylvania Date & Time:10 Nov 1997 18:07:10 GMT My Comments / Information I would like to find out some information on LHON. I am aware the condition is hereditary, but how does the pattern work, if any? My girlfriend and her father both have it, but it skipped her gradfather's generation. I don't understand how this thing works. Also, is there any possible cure known to man or anything that might put it in remission? Any help in this matter would be greatly appreciated. Thank you. All responses can be e-mailed to me. |
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Name:Christine Venema My Interest in LHON is: Someone I know has Leber's Congenital Amaurosis I'm From: New Zealand Date & Time:3 Nov 1997 19:45:02 GMT My Comments / Information I am assisting the families of a 4 month old baby that has just been diagnosed with Leber's Congentital Amaurosis. As only 2 have this condition in N Z. Reqesting any information would be most appreciated to assist this family. Thankyou. |
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Name:SYLVANO BIGNON My Interest in LHON is: Someone in my family has LHON I'm From: FRANCE Date & Time:18 Oct 1997 22:41:50 GMT My Comments / Information CAN SOMEONE TELL IF THEY HAD ANY RESULT WITH IDEBENONE OR COQ 10 AND WHER TO FIND MORE INFORMATION ABOUT THOSE . CONGRATULATION ABOUT YOUR SITE.SYLVANO BIGNON. WHER TO FIND INFORMATION CONCERNING |
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Name:kathy My Interest in LHON is: I'm From: florida Date & Time:17 Oct 97 01:23:34 BST My Comments / Information my son is 20 years old. His first onset of leber's was in nov. 1996 in one eye and then in jan. 1997 in the other eye. in sept. 1997 his vision was 20/1800 in both eyes. about 2 weeks later his vision was 20/800 in both eyes.. why the drastic change? he has now gone away to school. here it is now october and his vision has deteriorated to the point that he needs to use a cane to get around . i do not understand why the changes back and forth. has anyone else experienced any changes like this? |
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Name:Deirdre Hulsen My Interest in LHON is: Two of my sons have Lebes Optic Neuropathy I'm From: LI NY USA Date & Time:14 Oct 1997 02:16:16 GMT My Comments / Information My oldest son Brian contracted LHON four years ago when he was 23 years old. He was studying to be a chef at Johnson & Wales University in Rhode Island. He completed his education with a Bachelors Degree and is now going on for his Masters in education. I think he needs to talk with others who have the disease. |
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Name:Jim Kelly My Interest in LHON is: I am affected by LHON I'm From: Monmouth County, NJ ** Now attending Penn Date & Time:12 Oct 97 20:35:37 BST My Comments / Information I was diagnosed with Leber's Disease when I was about five or six years old. Because of the disease, I have very limited vision in my left eye. Recently, it was found that I also have a lesser diseased right eye -- also with Leber's. I want to thank you for creating this page (it is the first I've seen about the disease.). I know that there probably isn't much we can do about our condition, if we suffer from Leber's, but PLEASE LET ME KNOW OF ANY TREATMENTS YOU KNOW ABOUT!! THANK YOU AND GOD BLESS YOU FOR CREATING THIS PAGE!!! Leber's sufferer, Jim (jkelly@dolphin.upenn.edu) |
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Name:Dan Jones My Interest in LHON is: Someone I know has LHON I'm From: Sonoma, CA 95431 Date & Time:Sun, 28 Sep 97 22:11:19 BST My Comments / Information My friend's 80+ year old father has recently experienced the onset of Leber's (gene #11778). According to other information we have read, the #11778 variety has the least chance of recovery. This man may be the oldest person to experience onset of Leber's. The family is interested in any treatment options, including antioxidents, CoQ10, etc. Thank you. |
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Name:Imogene Wiers My Interest in LHON is: Someone in my family has LHON I'm From: Grand Rapids Michigan Date & Time:25 Sep 97 15:59:59 BST My Comments / Information Private |
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Name:RONNIE ENGLEHARDT My Interest in LHON is: I am affected by LHON I'm From: SOUTHERN,INDIANA Date & Time:22 Sep 97 01:46:23 BST My Comments / Information JUST LOOKING FOR INFORMATION ON RETROBULBAR & OPTIC ATROPHY I INHEREDITED IT FROM MY MOTHERS SIDE. WOULD LIKE ANY INFORMATION THAT ANYONE HAS. THANK YOU RONNIE ENGLEHARDT |
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Name:TRACIE ENGLEHARDT My Interest in LHON is: I think someone in my family may be affected with something similar to LHON I'm From: EVANSVILLE, INDIANA---USA Date & Time:21 Sep 97 23:35:41 BST My Comments / Information Private |
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Name:Art Klassen My Interest in LHON is: I am affected by LHON I'm From: Hamilton, Ontario, Canada Date & Time:15 Sep 97 16:58:10 BST My Comments / Information I recently came across info. from "alternative Medicine" mag. on the internet. I'm skeptical about it, but wondered if you have any info. or have been aware of it. It has to do with nerve regeneration. The story iss about some "doctor" in Tijuana Mexico that has used embryonic shark cells injected in the area of damaged nerves to regenerate damaged nerves in those suffering from SPINAL CORD INJURY. I also have been wondering what's been happening with "the myelin project", as might be pertinent to Leber's sufferers. I suppose most of us that suffer with this, would desperately like a solution, and although I don't want to grasp at straws, i am curious/eager to know if there is anything promising on the horizon. comments back? Thanks, Art Klassen |