Page 2 of 24.

<< < 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 > >>

Please login to post a new message.

• 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.
• View Full Thread

• 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
  
  
• View Full Thread

• Having trouble posting
• Posted: 2011-10-13 22:33:46 By Brittany L
• I have posted on here before. Everytime I come to see if I have any answers to my questions, I have to post something to see my older posts. Im technologically challenged. Does anyone know why it does that or is it just me?
• View Full Thread

• HI FROM TURKEY
• Posted: 2011-10-09 06:24:59 By erhan k
• HI MY NAME IS ERHAN.I'M FROM BURSA,TURKEY.I HAVE RP.
  MY FACE
  http://www.facebook.com/ekazma
  
• View Full Thread

• The RP Prism Blog
• Posted: 2011-09-12 14:24:17 By Roger B
• Earlier this year, I started a blog about RP and living with vision loss. I have had RP for over 40 years. Living with RP is not easy, but it is also not the end of the world. My blog is a place to find encouragement. Many of the questions I have read on this message board are discussed in my blog. The blog is called "The RP Prism" and can be found at www.therpprism.wordpress.com. I hope you will visit and find something of interest there. On the right-hand side of the main page you will find a link called "An Index of Blog Posts" (By subject and title). Hopefully this will make it easier to find what you are looking for. Also, there is a category of posts called "Just For Laughs". These are post of funny things that have happened to me because of my vision loss. Having RP is not funny, but some of the things that have happened to me are funny. I try not to take myself too seriously. I hope you will find something useful there.
  Thanks.
  Roger
• View Full Thread

• RP has more messages than any disease..
• Posted: 2011-09-11 14:35:33 By Ernesto E
• Call each of your friends. We need their help...ask them to send email to politicians, universities, research centers.....ask them to fijn cures
  Because of recession there is less money to donate...therefore scientific advances will take longer to obtain... We need participation. 9 million americans have vision problems...Act now...
• View Full Thread

• Husband has RP-should we have kids?
• Posted: 2011-09-05 03:35:32 By Justine G
• Hi,
  
  Myself and my husband are both 26. He has RP although it hasnt started affecting him in anyway yet. We want to have kids in a few years but I am really unsure if its right to have a child knowing that it might also suffer..what do you think?
  
  Thanks
• View Full Thread

• Got a heads-up on RP yesterday, but no diagnosis yet
• Posted: 2011-08-20 17:23:38 By Steve P
• At a regular eye exam yesterday, the doctor found "bone spicules" on my retinas that he said are classic hallmarks of RP. There are enough disclaimers here that I'm not exactly panicking:
  1) The signs are only suggestive. He didn't make a definitive diagnosis, although obviously he thought it important enough to tell me about it. (He also showed me retina scans of people with RP, and the pigmented areas on my retinas are just like theirs.)
  2) In my case, though, these bone spicules are only being detected when I'm already 56, and without any symptoms like night blindness, tunnel vision, or diminished acuity. So if in fact I do have RP, my case would seem to be extremely slow-moving.
  3) And following from the previous point and in light of RPs is generally slow progression, even if I do have it and it progresses normally, I could well be dead before it ever reached problematic levels.
  
  Still, since blindness is a potential outcome of RP, that prospect has remained stuck in my mind and left me kind of numb since I left the doctor's office yesterday.
  
  Two specific questions stick out at me: First, what else could cause retinal bone spicules? And second, what is the prognosis for RP when it's diagnosed in someone within hailing distance of 60 -- like me, for example?
  
  I appreciate the opportunity to learn from the experience of the people on this forum, and I look forward to any thoughts you'd care to offer. Thanks!
• View Full Thread

• Posted: 2011-08-15 02:12:42 By Jenelle L
• My twin sister and I recently started a blog about the challenges of living with RP. www.doublevisionblog.com
  We hope our blog can help others struggling with this disease to feel connected and know that you're not alone.
• View Full Thread

• LET'S CHAT
• Posted: 2011-08-13 18:30:00 By Tony R
• Hi! This is my second time posting this message. My name is Tony and I am a 44-year old man with RP living in New Jersey. I would like to exchange e-mails with other people who have RP so that we can share experiences and advice. Come on guys, nobody can deal with this alone! Write to me at Tony1967@comcast.net
• View Full Thread

• Prigmenton.....?
• Posted: 2011-08-12 23:19:51 By Robert W
• I found a site talking about an all natural pill called Prigmenton its 90day supply and supposed to cure RP within three months and costs 90. The company is based in New Zealand but from what I read i think the inventor is from the states. Can anybody give me insight on this. Ive asked doctors and all i get is a "Ill look into it" and then ask later and they say "I been to busy" or a "No i couldnt find anything out. You can email me at bobhowr2005@aol.com Also is there anybody in Louisville, KY with RP. Thanks
• View Full Thread

• RP & careers
• Posted: 2011-08-11 02:40:07 By Kevin Y
• Hi everyone. I'm 31, and living in Florida. I was wondering about what others with RP do for a living. I was diagnosed when I was 5, but my condition deteriorated faster when I was in my late 20s. I graduated with a BA, and was teaching overseas for 4 years. I'm trying to get back into school to be a certified teacher. I'd like to especially hear from teachers for advice and networking.
• View Full Thread

• RP
• Posted: 2011-08-03 23:01:08 By Barbara H
• Looking for a retinal specialist in the Washington DC area
• View Full Thread

• looking for a top retina specialist
• Posted: 2011-07-19 20:23:22 By Robert W
• we live in NY City. I have had RP for 35 years but need a new retina specialist, preferably someone who can also see my two teenage sons. I welcome any referrals.
  Thank you
• View Full Thread

• Looking for friends
• Posted: 2011-07-18 18:54:25 By Tony R
• Hi everyone! My name is Tony, I'm 44, and I have RP. I live alone in Woodbridge, NJ and I am new to this board. I would like to meet others with RO to share stories, experiences, and advice. I would especially like to meet other gay men like myself - but everyone is welcome to write. Since I am not big into chat rooms or the like, here's my e-mail address: Tony1967@comcast.net I hope to hear from all of you :)
• View Full Thread

• Recently Diagnosed with RP....
• Posted: 2011-07-14 11:06:15 By Jennifer D
• Hi,
  
  I'm 29 and from Indianapolis, INand was diagnosed this week with RP. I have an appointment to meet with a low vision specialist next month. I have always experienced night blindness and lack of peripheal vision while driving, but have always recieved my license. I was wondering when I should quit driving at night, or will the low vision specialist be able to help me answer that? Thanks!
• View Full Thread

• R.P support group?
• Posted: 2011-06-09 11:56:32 By Doris D
• I'm a 52yrs.old woman living in Northeast PA.,
  seeking out a local support group for RP.patients? anyone with informantion please contact me at defazio@echoes.net
  
  thanks,
  Doris
• View Full Thread

• Visually Impaired Audio Podcast
• Posted: 2011-05-21 17:27:02 By Alvaro G
• Hi, I am Alvaro and i am 36 and have RP and cataracts.
  I started a few weeks ago a audio Podcast for the low vision community and i want to invite you to listen, many peopel from all over the US and around the world are listening so hope you like it too!
  http://lowvisionbureau.podomatic.com
  And you can also add me on Facebook by going here:
  www.facebook.com/mrmagoony
  
  Hopeyou all have a great weekend and hope to make many firends here as usually have done in the past.
  Alvaro.
• View Full Thread

• RP and riding the Americas
• Posted: 2011-05-19 15:13:03 By Tauru C
• Hi all,
  I wanted to share this you all. I have RP and my girlfriend is blind in one eye and is m Hwy starting in January 2012. We want to raise awareness about blindness and the abilities of the visually impaired. Help spread the word! Join us. We are "Two Blind to Ride" at http://2blind2ride.tauruandchristi.com/
  
  Tauru
• View Full Thread

• Visually Impaired Forums (exjake.com) gone?
• Posted: 2011-03-24 16:23:36 By Gitti L
• Does anybody know what happended to the VIF?
  Or to exjake?
  
  Thanks.
  
• View Full Thread

• Autoimmune Retinopathy
• Posted: 2011-03-08 11:27:41 By Melissa H
• Is there anyone here diagnosed with RP who has also been diagnosed with Automimmune Retinopathy? My specialist, after years of treating me for cystoid macular edema with no real results, sent me to see Dr. Heckenlively at the Kellogg Eye Center in Michigan. Apparently the edema is being cause by autoimmune disease which is sometimes seen in conjunction with RP. The treatment is pretty serious and I would like to find someone else who may have gone through the treatment - which involves prolonged use of steroids and immunosuppressants.
  
  Any information would be greatly appreciated!
  
  Thank you,
  Melissa
• View Full Thread

• Eye Donation
• Posted: 2011-03-02 15:16:29 By Sharon J
• My 80-year old dad was diagnosed with RP in his 50's...he is almost completely blind. After he dies he wants to donate his eyes for medical research but I don't know where to start. Does anyone have any knowledge of an institute/medical/research facility where I may begin? We are in Northern California. Thank you.
• View Full Thread

• Wife is really coming down on me now...
• Posted: 2011-02-21 15:19:06 By Stephen P
• I'm 29, diagnosed at age 12. Recently I've had two hits to the head within nine days. The first one was on a pipe sticking off a local grocery store in broad day light, the result, concussion on the left side. The second nine days later (this past friday) was me trying to avoid running into a display in a cafeteria (I work at a middle school) and I walked into a steel divider for the doors, result, a gash next to my right eye.
  
  She's really been getting on my case about being careful, but I can only be so careful you know. She's on me about the white cane. Well I'm not willing. I work at a local middle school minutes (walking of course) from my house and I'm just not willing to be shouted out by the children who see me on a regular basis inside or out of work. Granted this year I'm in a self contained special needs program, the children still know me and I'm just not willing ot hear the yelling anymore.
• View Full Thread

• rp and epiretinal membrane
• Posted: 2011-02-15 23:24:34 By Shelly B
• Hi,
  
  I'm hoping someone has some experience with this. I have known I had rp since 1999. I have very little central vision in my left eye. Now my right eye seemed to be loosing sight. My doctor says I have epiretinal membrane in both eyes. It's getting hard to make out printed numbers at work on my reports. I'm using a magnifying glass now.
  
  He is checking with the Univ of MN and will get back to me next week. I've been on steroid drops and now some med that is a duretic trying to get the swelling down.
  
  I guess I just afraid. It's hard to find info about these two diseases together. The little I have found out is not good.
  
  It seems to be progressing fairly rapidly. The last three months I have noticed warped, blurred vision in my "good" right eye.
  
  Anyone heard of this?
  
  Thanks,
  
  Shelly
  
  
• View Full Thread

• Restaurants reviews for the blind, join us on Facebook!!!
• Posted: 2011-01-30 14:45:56 By Alvaro G
• 
  Hello everyone:
  I am Alvaro and I have RP and cataracts and I have posted here several times in the past.
  Today I want to tell you that I created a Project called Low Vision Bureau and has a Facebook Page where anyone with low vision from the United States, Canada, the UK and anywhere in the world can come and review a restaurant based in the lighting, service, crowd, etc…
  My idea is being supported by many low vision people who have helped me set up the Facebook Pages.
  I want to help everyone around the world choose a good place to go eat where they can feel comfortable and well served. We, the low vision community deserve the best like anyone else does so lets make this happen and have the restaurant guide for the blind.
  You can add me as a friend on Facebook by entering my email: luckyguy135@hotmail.com
  And please become a member of our Facebook Page and review any place anywhere, remember that there are reviews by region and city so choose the area where you live or visited to review it in an ordered fashion.
  Facebook Page:
  www.facebook.com/lowvisionbureau
  
  Thank you so much for reading this and come on in and join us in this amazing project!!!
  Alvaro.
  
• View Full Thread

• Books for child
• Posted: 2011-01-30 04:26:07 By Andrea R
• My daughter was diagnosed with RP in Dec. 09. She is now almost completely blind. I'm having a very hard time with it. She does have other issues and is a little developmentally delayed. she is 9 now and understands a little. My question is does anyone know of some really good books to help me explain to her that her sight is going?I need some help or right words to tell her that she is no longer gonna be able to use her eyes. HELP! Thanks Andrea
• View Full Thread

• Just was told I have RP, instead of Stargardt
• Posted: 2011-01-14 21:55:30 By Kris W
• I'm a long follower of the site. Recently I have relocated to the Boston area of MA. I went to Mass Eye and Ear for a vision check because it's been a while. It turns out that I have RP after believing I had SD for 21 years. What's the scoop? Research wise and potential treatments, clinical trials, etc?
  
  Thanks
• View Full Thread

• Supplement from Dr. Berson 2010 Study
• Posted: 2011-01-14 06:04:56 By Kevin E
• Hi Everyone,
  My company just introduced a Lutein and Vitamin A supplement based on the breakthrough 2010 Dr. Berson Harvard study on retinitis pigmentosa.
  If you are not familiar with this study, Dr. Berson found the RP patients would be able to retain their peripheral visual 3 to 10 years longer with a daily supplementation of 12 mg of lutein and 15000 IU of vitamin A.
  
  Based on these findings, we created VisionSave, a supplement that uses the exact same brand and quantities of Lutein and Vitamin A used by Dr Berson.
  
  I would like to offer some free bottles of VisionSave to those interested. I can send a free bottle to the first 5 people (in the US or Canada) that send me their name and address. Please click the link below and use the Email US link to send your information.
  
  You can learn more about VisionSave and the Dr. Berson study by clicking the link too.
  http://supplementfirst.com/VisionSave.html
  
  Thank you,
  Kevin Elliott
  Supplement First
  
• View Full Thread

• cure
• Posted: 2011-01-11 12:14:35 By Robert O
• View Full Thread

• Posted: 2010-12-25 05:48:41 By erhan k
• hi my name is Erhan. I'm 40 years old i was diagnosed with Rp when i was 8.I live in Turkey.I am civilengineer bu I cant do my job.because my vision very loss.ıs there a treatment for rp?
  my msn
  ef1616@hotmail.com
• View Full Thread

Page 2 of 24.

<< < 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 > >>