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• 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.
  
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• 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
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• 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
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• 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
  
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• cure
• Posted: 2011-01-11 12:14:35 By Robert O
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• 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
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• I have RP and would like to get information with people on Social Security Disability
• Posted: 2010-12-23 14:52:18 By
• I'm 39 and live in San Francisco. I'm having more problems in the dark these days and contemplating going on social security disability. I've had RP all my life and am fortunate that my disease is slow, but I only have central vision and to proud to walk with a stick. If anyone is on Social Security Disability, I like to chat and find out about the steps and what a person is intitled to. My email address is tylerstinytot2002@yahoo.com, feel free to email me. It's always nice to meet someone with the same day to day ordeals. Merry Christmas and Happy New Year!
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• Retinitis Pigmentosa
• Posted: 2010-11-21 01:10:23 By Mansel R
• Hi all,
  
  I am 21 years of age, from Kwa Zulu Natal, South Africa, was yesterday diagnosed with RP. I have all the faith the this is not going to spread further. I also need to commuicate with others who have the same problem so please contact me on my mums email address rajaharamjane@live.com.
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• Posted: 2010-10-18 20:10:16 By Brittany L
• Hi. I am 17 and I was diagnosed with RP at age 5. I haven;t tried for my driver's license because I was told I could only drive between the hrs of 1pm to 4pm. I want to be a math major. Would I be able to do something with the math field with this disease? If not, what else can I do with my life?
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• Retinitis pigmentosa
• Posted: 2010-10-12 00:51:55 By Rachel O
• Hi, I am 23 and have been diagnosed with RP since about age 6. I have never gotten my drivers license because I was always to scared. Now here I am 23 and I feel like such a loser. I have 2 kids ages 4 and my baby just turned 1. I am totally reliant in my husband and other family when i need to get anywhere and it is just so hard! Is there anyone else like this?
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• Posted: 2010-10-09 16:03:24 By Stephanie B
• Hello everyone, I just found out that I have RP and want to know what are the things I should be doing to prepare myself for the loss. I am a single mother of two teenagers and I'm thinking maybe I should start off by making sure they learn how to drive. Has anyone participated in any of the experimental treatments or medication?
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• Retinitis pigmentosa
• Posted: 2010-09-26 17:36:31 By Kathi L
• Hi. My 21 year old son was recently dianosed with RP. He has night vision problems and has lost some peripheral vision. Just looking to hear from someone that might be able to give me some information or support. He's living in New York City finishing his last 2 years of college. Is there anyone out there with RP living in New York?
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• Hiring a Driver
• Posted: 2010-09-21 01:43:08 By Arlissa V
• Hello there. I'm 27 and have RP. I was diagnosed at 23. I no longer drive at night, but lately find that there are many activities I'd like to take part in at night. My husband works late, so I can't rely on him. I'm thinking of hiring a personal driver. Does anyone have any experience in this?
  
  I've looked at sites like WeDriveU and YourCarOurDriver, but they're a little expensive for me ($35/hr, 3hr minimum). I've also heard of people who hire college students to drive them around. I'm a little afraid of the liability and risk involved with hiring someone I don't know and who's not covered by one of the driving services mentioned above.
  
  Any thoughts, advice, experiences? Also, does anyone know of any financial assistance for these types of things? I don't qualify for disability because I'm only legally blind at night, not during the day.
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• join my site to chat also
• Posted: 2010-09-03 13:24:36 By Janet A
• I'm inviting you to join me in a group on MomsLikeMe.com called "degenerative eye diseases ." We can use it to share information and photos, or even coordinate meet-ups. It's a great resource and I would love for you to join me there.
  
  To join, click this link
  http://pittsburgh.momslikeme.com/grp/moms.pittsburgh/degenerativeeyediseases?pwd=hula-haled
  
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• New Jersey
• Posted: 2010-08-29 08:52:26 By Mani V
• Any RP patients in Central and south jersey? I am a 37 yr old Man idemtified 12 yrs back. Email me vmm70t@yahoo.com
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• anxiety medication
• Posted: 2010-07-08 21:46:42 By debra F
• My husband was diagnosed four years ago and has 20-30 degrees of vision left.
  
  He is noticing the deteration and is becoming extremely anxious to the point that we both think he might need medication for his anxiety.
  
  Do any of you use meds for anxiety/depression?
  
  Should he see a Psychiatrist?
  
  Can you make any recomendations?
  
  Thanks
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• RP MRI Research Study
• Posted: 2010-06-15 14:54:11 By Samantha C
• Hi everyone,
  
  I am currently a PhD student conducting a research study on RP at the University of Southern California and am in need of participants who have been diagnosed with RP. I have pasted my study flyer and contact information below (PLEASE NOTE: no treatments of any kind are offered through this study).
  
  Thank you!
  
  ==Participate in fMRI Research==
  Here is an opportunity to participate in a study using functional magnetic resonance imaging (fMRI)—a non-invasive research tool used to study the brain, mind, and behavior. We will use this imaging method to take images of your brain while you perform simple perceptual tasks.
  
  The following individuals will be considered for enrollment:
  •Individuals with retinitis pigmentosa and some visual memory
  You must be over the age of 18 to participate.
  
  Testing will include 1-3 sessions, 1 hour 30 minutes to 2 hours each.
  Experiments will be conducted at the Dana and David Dornsife Cognitive Neuroscience Imaging Center at USC.
  You will be compensated for your time.
  
  If you are interested or have questions, please contact Samantha at
  323-442-6765 or email address sicunnin@usc.edu
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• sup
• Posted: 2010-06-09 20:25:05 By Oscar N
• where are you from Sammie.
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• Hey everyone
• Posted: 2010-06-07 17:49:36 By samantha r
• My name is sammie, I am 21 and just found out that I have RP. I am just curious how others are handling it. you see I am from a small town and no one aroud here had even heard about RP before i got the news. So it has been hard to deal when know one has a clue what your going threw. I then found this web site and discovered a little hope. There is not an open chapter in my state :( but I hope to here back from anyone willing to let me know I am not alone.
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• How to help someone with RP
• Posted: 2010-05-24 10:32:18 By Aaron P
• Hello All,
  
  I have a very dear friend of mine who has RP. I struggle with the fact that I am not the best person to help her out with her loss of vision. I struggle with the fact that she doesn't feel secure around me because I am pretty bad at supporting her and helping her out. If anyone has any suggestions on how to help me out so that I can help my friend out would be greatly appreciated. Please e-mail me at portera@cooley.edu with any suggestions.
  
  Thanks,
  
  Aaron Porter
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• RP
• Posted: 2010-05-12 08:20:58 By lokesh t
• Hi.I am lokesh 33 From India. I suffer with Rp.I want to know about treatment
  lokeshtak@yahoo.com
  what should i do
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• Does anyone post on here anymore?
• Posted: 2010-05-09 18:29:08 By Bridget P
• Is there a new site that people are using? I have used FFB in a while now, but last time I posted I didn't get any response, which was very unusual.
  Thanks
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• Parents with Rp with more than one child
• Posted: 2010-05-09 17:29:10 By Bridget P
• Hi.I have RP. I am looking for other parents who do not drive anymore, who juggle the busy life of having more than one child. Please write me. My husband and I are considering having a 2nd child and I just have so many worries. Our son is almost 4 and will begin a 3 hour school day in August. Already we are trying to find people to pick him up and bring him home bc my husband works 30 minutes away. I know as he gets older there will be even more things that he will be doing like sports, etc.
  Are there anymore websites that people with RP chat on?
  
  Thanks
  Bridget
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• 2010 RP Social in Sacramento
• Posted: 2010-05-05 21:42:21 By Maria P
• Hello everyone,
  
  Here is the info for the 2010 RP Social open to all with retinal degeneration or other blindness as well as Usher. For info go to: www.rpsocial2010.com It is a great way to meet others who are dealing with RP or Usher. I am looking forward to going to my first social.
  Hope to see you tehre!
  Marisa
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• Ignorance of Insurance Underwriters
• Posted: 2010-04-26 12:18:21 By Jeffrey H
• I am hoping to find out if anyone else has had the same situation in dealing with Allstate as I just had. I emailed an allstate broker requesting information on my husband who has had RP since 2001 and is legally blind (has 4 degrees left). I even gave them the name of the disease. I received a voicemail stating that the agent was asked by the Underwriter to find out how my husband became blind, (ie. accident or illness) and stated that RP was just a "fancy word for Blindness". I was astonished and you can bet they received an email back with this website link and my absolute amazement at their ignorance. They most definitely may loose my business because of it.
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• Another Solid Article on Treatment Options for RP
• Posted: 2010-04-22 12:25:53 By Tom B
• Though we don't have a cure yet, there are practical steps that many of us can make to preserve the vision we have. Check out the article for a summary...
  
  http://www.associatedcontent.com/article/2915290/treatment_options_for_retinitis_pigmentosa.html?cat=70
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• Living w/ RP
• Posted: 2010-04-09 14:31:24 By Alisson C
• Good Afternoon to all:
  
  My name is Alisson i'm 24yrs old and recently diagnosed with RP. I dont know how far back i go with RP because since my childhood i've always had trouble seeing at night and pretty much everything else like in school for example. I now dont know what to expect of it, This has been devastating. Can someone help, and or what to expect?
  
  Thanks.
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• Great Article on Living with RP
• Posted: 2010-04-09 12:23:55 By James B
• Many folk who post are looking for information and insights regarding living with RP.
  
  Here is an excellent article that shares a first-hand account of how the disease progressed, along with some really good advice.
  
  www.associatedcontent.com/article/2860558/living_with_vision_loss.html
  
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• Macula Dimpling?
• Posted: 2010-04-01 13:01:05 By Robyn M
• My daughter saw the eye doctor this week and he said that she appears to have some "dimpling" of her macula. She has early signs of RP but not too serious yet. She is 11 years old. Her dad has RP as well. Does anyone know anything about macula dimpling?
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• GETTING CATARACT SURGERY
• Posted: 2010-03-24 19:18:08 By John A
• I have RP, I am thinking of getting the ReSTOR implant. I was wondering has anyone has this done,was it worth it. Do you still have to wear glasses.Or should I get the standard surgery.
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