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• Eye MD in Boston MA
• Posted: 2013-05-28 14:41:54 By Van H
• My father was diagnosed with RP when he was 17 yrs old and now he's in his 60s. His RP is getting worse. Are there any doctor that specialize in RP in/around Boston MA?
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• rp
• Posted: 2013-04-29 09:44:02 By Ernest C
• hi i am a 52 year old man who has been night blind for as long as i can remember. A little over a year ago i was diag. with rp. For the last several months i have had bright lights that swirl around in my eyes . This happens wheather i have my eyes open or closed. I am wondering if this is part of rp or some other problem. I have asked my Dr. but nobody seems to know why this is happening
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• RP
• Posted: 2013-04-28 00:09:50 By Tony T
• hello, it's like a ghost town in here...Lisa?
  Alexis? you doing ok...read your post, first time here...I just got diagnosed with RP about a month ago...kinda depressing..RP specialist is sending me to USF, one of 3 place in Fla that does EOG testing, I guess, to tell me more bad news?
  well anyways, keep the faith or at least try..
  Tony
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• My 10 yo son was just diagnosed with RP
• Posted: 2013-04-22 13:36:29 By Kim O
• Hi, My 10 year old son was just diagnosed with "rapidly progressing" RP. I'm desperately trying to connect with some other families with young children who are going through this. Despite knowing something has been wrong for over a year, and seeing many specialists, my son was just diagnosed and is already legally blind. He's a straight A student in school, and it is inconceivable to me how we could have missed this?! If you have gone through this, please reply. I'm so sad, and I'm trying to be strong for him because he is amazing! Thank you.
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• i was just diagnosed with RP
• Posted: 2013-04-16 10:46:26 By Alexis C
• I'm 23 and already am pretty much nightblind. I'm glad everyone on here is pretty hopeful but I am hopeless. I don't want to do anything anymore because what's the point if i'm just going to lose my vision anyway? Why continue going to school when i wont be able to utilize my degree anymore? it's great that there's so much research going on but at the end of the day that's all we have. research and conflicting recommendations because nobody really knows anything.
  
  this is a the equivalent of a death sentence for me. i commend everyone on here who is aggressive and positive, but after almost losing my right eye from an unrelated accident and enduring 12 years of surgeries, i don't have anymore fight left in me; especially when there's no real concrete cure on the immediate horizon.
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• RP and Micro Aucpuncture
• Posted: 2013-02-19 07:54:42 By Rosanne W
• Anyone know anything about Micro Acupuncture for Vision? No needles into eyes, only hands and feet?
  Pros and cons.
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• Tudca
• Posted: 2013-01-12 11:41:09 By Sharen R
• What dosage of TUDCA should an rp patient take and where is it obtained?
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• Careers for those with rp
• Posted: 2013-01-12 10:37:17 By Sharen R
• My son is in an audiology program at the doctoral level. Has 2.5 years to finish the program. Should a career change be considered? Just diagnosed 2 weeks ago. We are distraught and don't know what to do for a career. Please give advice. Any good careers that can last with disease progression?
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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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