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• New cell phone for visual impaired individuals
• Posted: 2012-12-05 14:41:31 By Michelle F
• Has anyone heard if the Droid phone is available to purchase yet which is designed for the visual impaired? I thought I read this on facebook but nobody else that I have spoke to has heard about it. Thanks!
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• New forum for RP patients
• Posted: 2012-11-19 10:13:13 By Javier S
• Hello, my name is Javier and I have RP. I have started a new forum for people with RP at RPforum.org. The goal of my forum is not only to socialize with others that share out condition, but also to share hobbies and fun activities that we participate in despite of having RP. I want to have a space where we can demonstrate how having this disorder does not limit our ability to enjoy life. Please come check it out: RPforum.org
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• Micro Acupunture
• Posted: 2012-11-18 21:47:15 By Tom B
• Has anyone had this treatment? Is it the same thing as the hand held microcurrent stimulator? I have one of those and don't see any results.
  
  If you know of a home unit, please post a link.
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• Bionic Eye Treatment for RP
• Posted: 2012-10-25 13:36:39 By Jordan J
• I was wonering if anyone knew of the bioni eye treatment they have for rp. I was diagnosed with rp when I was 10 years old. It's been almost 10 years now that I've been living with it. Nobody has been able to tell me anything about it including doctors
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• hello
• Posted: 2012-10-16 08:39:24 By Miseon M
• Hi anyone have RP in Hawaii?
  I'm live in hawaii and can't find any RP community in here...>.
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• sectoral retinitis pigmentosa
• Posted: 2012-10-07 03:18:29 By patrick s
• Hi all, i was recently diagnosed with sectoral retinitis pigmentosa, (a sectorial form of rp), i am looking for people having sectoral rp.
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• Hello
• Posted: 2012-09-19 08:38:09 By Xuan H
• I'm a RP from China.
  Hope to talk to all of you.
  P.S I'm a screen reader user.
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• Stay Positive
• Posted: 2012-09-11 14:38:47 By Lindsey S
• I know it's hard to stay positive when you have RP, but just know you're not alone and that there is always still hope!!
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• Medical treatment or conjunctive therapy for Retinitis Pigmentosa
• Posted: 2012-09-01 11:22:22 By fady l
• I am looking for a therapeutic treatment for RP however i couldn't find any . the affected person is a female member in my family and her doctor in Egypt told her no treatment for that disease . I need any treatment or even supportive treatment to prevent the loss of vision.
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• Retinal Specialist, Denver, CO
• Posted: 2012-08-21 21:24:46 By Diane B
• I am looking for the BEST RP Specialist in Denver. I welcome any referrals. THX!!!
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• phase ll study of cntf/ntc-201
• Posted: 2012-08-20 14:15:15 By Randy W
• There is a good possibility that I will be accepted to participate in a new study involving the cntf implant to study safety and efficacy as this implant relates to preserving cone cells in subjects with RP that still have good central vision. the ID is clinical trials.gov ID NCT 01530659. My questions are for anyone out there who has received the cntf imlant. what adverse effects have you had? any complications, discomfort, vision loss. and would you do it again? or any other comments or suggestions you may have would be welcome thanks, Randy
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• OkuVision OkuStim
• Posted: 2012-07-14 22:44:18 By Henry A
• I've received an ad for the OkuVision OkuStim system, which purports to slow the progression of RP. the German site has all the earmarks of snake oil. They claim to have had a successful clinical trial, but to get to any link for scientific information you must resgister as a doctor or a retailer. I doubt they have actually had any properly per-reviewed publications or controlled trilas, but there's no way to tell from their site. Does anyone have further information? Of course, their product is not available in the US.
  http://www.okuvision.de/en/products/products.html
  
  Henry
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• adopted male wondering who in my family has rp
• Posted: 2012-07-07 19:46:19 By James A
• hi im james ackerman from ohio and i was adopted at 12 months my biological father is from alabama and my mom is from cleveland ohio. i have 2 step brothers and one biological brother mitch who is adopted with me in a loving family in ohio. Both me and mitch have retinitis pigmentosa but r different. his is slower active and mine is agressive active. i talked to my half brother vincent and he said he dosnt have rp or any eye disorder. he is my biological dads son from a different mom. victor is my biological mothers son to a different dad and he dosnt have rp either. im here wondering if one of my parents both r infected with rp or just one of them. hope to read ur comments and pray for a cure soon. thank u all for the support and god bless u
  
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• transgender youth
• Posted: 2012-06-23 23:46:58 By sarag m
• My child, born a female is going through with hormone therapy to become a male.
  
  Has anyone out there have any experience with this?
  
  One, of my many concerns, is that it may make her/his RP worse or speed up.
  
  thanks
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• Roanoke VA
• Posted: 2012-06-20 12:22:02 By Joyce S
• Anyone in Roanoke VA?
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• Anyone heard of isotine eye drops
• Posted: 2012-06-20 12:10:24 By Joyce S
• Their is a conversation going around today on facebook in the retinitis pigmentosa group about these eye drops Anyone use them? Thanks
  
  http://www.isotineeyedrops.com/eye-care/natural-eye-care-tips.asp
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• RP and alcohol
• Posted: 2012-06-07 10:51:38 By Steven B
• Does anyone know if drinking alcohol has any adverse effects on RP.
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• Retinitis pigmentosa
• Posted: 2012-05-23 14:29:12 By Liz T
• Within the last few years, my mom was diagnosed with Retinitis pigmentosa. Her vision was always pretty awful and she was always walking into stuff & the family would joke about it. As the years have progressed, it has gotten worse and even though she still drives (not at night thankfully), I still have genuine concerns about her well-being. She won't stop driving (even though we live in a city with excellent public transportation) and she's too stubborn to go to a support group about it or even discuss it really.
  
  I hate to watch my mother slowly lose her vision. I can't go to the store with her without her walking into a display or someone else. I want to help her but she won't let me. Does anyone have any suggestions?
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• fish oil for RP
• Posted: 2012-05-23 13:35:40 By Tim B
• Does anyone know if fish oil capsules are okay to take if you have RP?
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• QLT091001
• Posted: 2012-05-17 19:35:30 By Thomas B
• Have you read about this trial? Sign me up! Nope, my vision is "too good". Must be 20/800 or worse. Geez, I still drive. I need to get some and administer it myself.
  
  http://www.ffb.ca/research/research_news/QLT_RP.html
  
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• fayetteville
• Posted: 2012-04-08 15:25:31 By Michelle P
• Hello. I am Michelle and I have RP. I was wonderding if anyone else lives in fayetteville NC
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• recently diagnosed
• Posted: 2012-04-04 10:54:23 By Jennifer P
• In late January I was diagnosed with RP at a routine eye exam. After a 4 year delay of being there I decided to go for new glasses. I am 32 years old, and currently have no vision loss that I can tell. When doctors ask "can you see the stars or can you see in the movie theater?" my answer is "yes." The doctors feel that it is an autosomal dominant but that is just an educated guess, I have not looked into getting genotyped and I am not sure how to go about that process.
  I am very fortunate that I have no vision loss so far. I am also very lucky because I am a researcher at Penn. I work in the gene therapy field. I was able to speak with Jean Bennett, and her husband, Dr. Maguire is my retina specialist.
  I am also a mother and the only one in my family diagnosed with this disease. In that aspect I feel very alone. If there is anyone out there who would like to share their story with me or would like to talk please email me at jellmer@gmail.com
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• Test
• Posted: 2012-03-25 09:22:05 By Michael P
• Test
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• Cataract Surgery
• Posted: 2012-03-22 19:19:21 By Bridget P
• I am wondering if any of you have had your cataracts removed. If so, how did it turn out? I have been "thinking" about it for 2 years now. I'm just so scared that the little sight that I do have could possibly become worse. The doctor that I saw today(to get my contacts Rx), told me that it was just like knowing that I have something, and could make it a little better, but choosing not to...I just don't know what to do.
  I have 2 small children, and right now, with my contacts, I can see them pretty well, and interact with them. If something were to go wrong, and I lost even more of my sight, or all of it, I would never forgive myself. The doctor was saying that if I had them removed I could possibly not even need my contacts. I just think that his hopes are way too high. I'm not sure if he really understands why I'm scared to do it.
  
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• cell phone
• Posted: 2012-03-07 11:49:32 By Michelle F
• Can anyone recommend a cell phone with is easy to use? I have RP and low vision.
  
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• TUDCA
• Posted: 2012-02-18 17:54:58 By Thomas B
• ThermoLife has discontinued production of Liver Longer, their TUDCA product. Does anyone know of a good alternative that is available?
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• RP and Vitreomacular Traction
• Posted: 2011-12-25 17:43:28 By Gina A
• I was diagnosed with RP about 5 years ago. In the last few weeks my right eye has become increasingly blurry. I went to the Optometrist and they did and OCT scan and referred me to an Opthamologist and said that it appears that I have vitreomacular traction. I wanted to see if there was anyone out there that had RP and this as well.
  If so, email me at galderiso@gmail.com
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• TUDCA RP Treatment
• Posted: 2011-11-11 09:41:11 By Eileen M
• Subject: TUDCA RP treatment
  
  Hello,
  I have RP and I learned about Touroursodeoxycholic Acid (TUDCA) treatment to stop vision loss in RP at the June 2011 VISIONS conference of the US
  Foundation Fighting Blindness, which was held in Baltimore, Maryland. Since then I have begun, starting two and a half weeks ago, to take the form available in the United States (Liver Longer by ThermoLife, available through amazon.com and various). I am searching for other persons who are taking TUDCA for RP or who are interested in researching this topic.
  
  The US Foundation Fighting Blindness is currently funding a study at a university in Oregon on non-human primates to determine the therapeutic
  dose of TUDCA for RP (though I understand that it is believed to probably start at 1500 mg/day). Basic info about TUDCA is available at
  Wikipedia: http://en.wikipedia.org/wiki/Tauroursodeoxycholic_acid
  
  Please contact me by email at eileenem@bestweb.net if you would like to discuss the use of TUDCA to stop or slow vision loss in RP (my form of RP is probably autosomal dominant).
  
  I look forward to hearing from you!
  
  Eileen
  
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• driving
• Posted: 2011-11-05 17:37:34 By
• Hi i have RP and i am turning 16 soon, so i will be able to drive. i was wondering if anyone with RP drives, and if anyone thinks it is a good/bad idea. i am not blind and only have some tunnel vision and night blindness, and i know i will not be able to drive at night. Any advice is appreciated.
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• TUDCA RP Treatment
• Posted: 2011-11-05 11:41:40 By Eileen M
• Subject: TUDCA RP treatment
  
  I learned about Touroursodeoxycholic Acid (TUDCA) treatment to stop vision loss in RP at the June 2011 VISIONS conference. Since then I have begun, two weeks ago, to take the form available in the United States (Liver Longer by ThermoLife, available through amazon.com and various). I am searching for others who are taking TUDCA for RP or who are interested in this topic.
  
  The FFB is currently funding a study at a university in Oregon on non-human primates to determine the therapeutic dose of TUDCA for RP (though I understand that it is believed to start at 1500 mg/day). Basic info about TUDCA is available at Wikipedia: http://en.wikipedia.org/wiki/Tauroursodeoxycholic_acid
  
  Please contact me if you would like to discuss the use of TUDCA to stop or slow vision loss in RP (my form of RP is probably autosomal dominant).
  
  I look forward to hearing from you!
  
  Eileen
  
  
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