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• Still Here!
• Posted: 2009-01-12 16:53:38 By Darran Z
• Hello Vicki T,
  
  I'm still around. I'm not sure everyone has moved over to the RPList, but some of you have moved there.
  
  Marisa is correct, that I have been a bit busy the past several months when at the same time this site got retrofitted. But I'm poking in and out here now.
  
  Darran
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• Cleveland VisionWalk
• Posted: 2009-01-11 19:14:16 By Daniel G
• Over the past couple months, I have been working with the FFB to host Cleveland’s 1st VisionWalk this Spring. So far we have raised over $11,000, but our goal is $50,000. All proceeds go directly to the Foundation, which in turn is used to fund research to find a cure for blindness.
  
  I’ve followed this board for sometime now and think there are others out there that might be willing to help. If you know someone or a business you think would be willing to sponsor\donate, please let me know or direct them to visionwalk.org.
  Dan
  
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• assistive technology question
• Posted: 2009-01-11 14:52:14 By Chong W
• Hello everyone! I'm wondering if anybody knows of an online database of assistive technology and venders for the blind. I'll be most greatful!
  
  
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• X-Linked RP Diagnosis
• Posted: 2009-01-06 12:01:37 By Stephen G
• My 12 year old son was diagnosed with X-linked RP by a well-known Philadelphia hospital. We took him to the Mass. Eye and Ear Infirmary for a 2nd opinion. In Boston, his ERG came out in the normal range, and Dr. Bernson cleared him of the disease.
  
  I urge everyone to get a 2nd opinion, as there can be many reasons why an ERG gives low readings.
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• test
• Posted: 2009-01-06 11:53:36 By Stephen G
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• Happy Holidays
• Posted: 2008-12-21 09:59:48 By David A
• Happy Holidays To All.
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• support
• Posted: 2008-12-16 12:50:31 By Lisa S
• Hello. I have been diagnosed with RP and would really like it if there was a place where people could chat, e-mail back and forth. I work for an eye surgeon (how ironic)and am able to talk with some patients, but it would be nice to talk with other people going through the same thing. Anything like this out there?
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• Where did evertone go ?????
• Posted: 2008-12-03 19:35:33 By Michael P
• There use to be a regular group of people who posted on this site but not since they ghanged to this new format. Did everyone move to a new site or just give up trying to figure out this (improved ????) one? I didn;t post often but enjoted reading MOST of the old posters thoughts and ideas. Not sure who came up with the new format but I don't consider it very user friendly.
  Mike
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• Micro current stimulation
• Posted: 2008-11-28 03:40:57 By joseph M
• Has anyone out there used or had direct contact with people with RP who used microcurrent stimulaton? What where the results?
  I know there where information on it some ages ago but i didnt manage to get info from people who really used it.
  
  thanks
  Jo
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• Support Groups
• Posted: 2008-11-26 23:25:57 By Melissa M
• Hello, I found a wonderful support group and wanted to share it with you. Go to www.MDJunction.com and join the RP support group. It needs members who wish to share their personal stories and questions about RP only. It is NOT a dating site. Thanks for listening.
  
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• Atlanta Support Group?
• Posted: 2008-11-25 16:54:55 By Kirsten S
• I am 33 and have RP. I live in a suburb of Atlanta and am trying to find a support group to join or start. Anyone know of a support group here in Atlanta?
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• Running
• Posted: 2008-11-16 17:07:05 By David A
• Does anyone know where I can get a running shirt like the one John Altan Kusku is wearing in the article about him titled ‘Running in the Dark, but Seeing the Light’. Like John I also run and step on peoples shoes and run into them. I do not want to advertise that I am blind but it maybe better than getting cursed at.
  
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• Computer Software
• Posted: 2008-11-12 09:27:52 By James M
• My wife (who has RP) would like to start using the computer. What software would you recommend? JAWS??? Anything better??
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• Computet
• Posted: 2008-11-12 09:26:01 By James M
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• Question
• Posted: 2008-10-29 23:51:58 By Stephanie R
• I am 46 and female. I am a manifesting carrier of X-linked Cone-Rod dystrophy. My Dad and Uncle were both blind. My 19 year old daughter has no symptoms.
  
  My question is as follows. We were recently in the car with my son who is 14.5 years old. It was 10pm and dark and we were driving on the highway. Out of the blue (we weren't talking about vision at all) he happened to mention that he sees better in the dark. He is nearsighted and wears glasses but his eyes have always corrected to 20/20 or 20/25. He also mentioned while we were driving in the dark that it is easier to read with his glasses off "because the print is bolder without the glasses." I thought these were odd comments from a teenager, especially since the CRD is not a topic of discussion in our family.
  
  My question is two fold. A) Should I be concerned and take him to my doctor in Iowa and B) Do any of you see text "bolder" without correction for nearsightedness (or at least when the sight was correctable?) I have heard that sometimes nearsighted people don't need glasses to read but not that the text was bolder.
  
  I don't want to scare him unnecessarily so even though I realize I could always have him evaluated I would rather wait until there is a reason or need to do so. Since he sees ok now with the exception of being more comfortable in the dark and the comment about reading without his glasses I am not sure the time is now.
  
  Thanks!
  Steph
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• color canes?
• Posted: 2008-10-29 22:59:04 By racer x
• Does anyone know where i can get a cane with different color tape on it? like pink or blue or whatever else? seems as tho they can put a different color on the aluminum...i see there are black ones but other than that just the standard red and white ones.
  
  Thanks for any replies
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• Do you use USENET?
• Posted: 2008-10-25 19:59:43 By Jonathan R
• How many of you are regular users of USENET?
  
  Would any of you use a retinitis pigmentosa USENET group if one was to be created?
  
  Personally, I prefer USENET groups to any website group, but there currently is not USENET group for RP. And, as many of us have recently commented, website groups have to potential to be unstable and unreliable.
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• Can anyone help my mother in law
• Posted: 2008-10-25 17:55:47 By Audrey S
• Dear Message board for people with RP
  I first want to say, I am sorry that all of you are suffering with RP, and I think, I am not sure, that my brother in law has R P or some other eye disease, which has caused him to become legally blind. He needs help though, even through all of his operations, on how to treat other people that love and live around him. He is controlling to his mother, and abusive. It could be the medicine he takes, or the fact that he was allowed to talk to his parents when he was young, and continues to talk to his parent (one now), without holding back on sound and words (that are off color). Other relatives receive the same treatment, but it is his mother that I am concerned about. If she would bring this up to his doctor at John Hopkins, then I am sure that he would lower his tone, and words. Please contact me at audreycsmith@verizon.net, and tell me who can give us some help on getting him to act normal, on more, than just a little bit at a time. His mother is in her 80's, and needs to live the rest of her life in peace. God bless the Foundation for all of their good work. I will pray for all of you tonight. For anyone needing help to recover from this illness, you might want to check into the Foundation of the Blind in Canada. Supposedly in ten years, there will be no one, unless they don't want to, to be able to see again. I don't know if that is an operation using stem cells or not, but check into it.
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• @Thomas
• Posted: 2008-10-22 18:16:02 By André L
• It is not a "new" finding. It was discovered before in Japan.
  I think the difference now is that they tested it on live mice.
  It has been commented further on the RP mailing list by a certain Gislin.
  If you search the archives for "muller" you will find the post(s).
  I hope it will result in something practical soon, but I'm not too optimistic.
  
  Repairing damaged retinas is now a possibility:
  http://www.rikenresearch.riken.jp/research/274/
  
  
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• COMMENTARY
• Posted: 2008-10-22 11:09:02 By Thomas P
• Hello all...
  
  Is it me, or is the RP Message Board BORING.
  I am finding that threre are only a very few
  people on this board communicating at all.
  
  Does anyone care? Is there any HOPE?
  
  Where is the excitement? Is there anything to be excited about other than testing with MICE?
  
  Are we waiting for that MAJOR breakthrough?
  Is that it?
  
  Why do I feel like giving up on this board?
  
  Comments anyone?
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• Help Needed
• Posted: 2008-10-15 12:57:08 By Thomas P
• Hello...
  
  What do going blind or already blind people do
  when they ride in a car?
  
  How do you handle the riding experience?
  Does it stress you? Do you relax, or meditate?
  I panic.
  
  Any advice would be great.
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• RP
• Posted: 2008-10-13 18:32:26 By kimberly s
• My 14 year old son was just diagnosed with RP, can anyone tell me if there is a cure or any treatments he could take, we just found out this past thursday. thank you
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• RP and laser surgery
• Posted: 2008-10-12 17:14:15 By Mark H
• I have RP and ushers syndrome 2. I had cataract surgery about 5 years ago that helped with my central vision. I have no peripheral vision at this point. But have very good central vision.
  
  After cataract surgery I had laser surgery to clear a hole in the film that covers the lens after cataract surgery. Its been five years and I think the film has come back. I am waiting to see a doctor on this.
  
  My question is whether laser surgery to put a hole in the film causes trauma to RP disease thus accelerates the disease thus causes additional loss of sight? If so, then I need to decide whether to have the surgery or live with the "haziness".
  
  
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• Dr. Dong Feng Chen - Schepens Eye Research Institute
• Posted: 2008-10-10 17:07:13 By Thomas P
• Hi all...
  
  MY PERSONAL THOUGHTS
  --- UTMOST PRIORITY ---
  
  Recently, The RP Foundation (Int'l) presented Dr. Dong Feng Chen
  from Schepens Eye Research Institute, (Harvard) the 2008 award for
  outstanding achievment for her work on "awakening retinal stem cells".
  
  Not only do I applaud the Foundation for choosing Dr. Chen, but it's her
  invention and process that is light years ahead of any othre proposed
  treatment, including CNTF, which in my opinion is "dwarfd" and
  "archaeic". With the CNTF model, a capsule is surgically implanted into
  the eye which leads to a very inefficeint delivery system, and further
  complications.
  
  Dr. Chen will simply use a drug to re-awaken the rods and cones
  (photoreceptors) that are already in your eye - just sleeping.
  Thus minimizing potential conflicts.
  
  The bottom line here is that finally, she is now recognized by not only FFB
  and other highly medical institutions but is light years ahead of any other treatment
  which WILL lead to a cure for Retinitis Pigmentosa.
  
  I strongly believe with all my heart that Dr. Chen will DELIVER US from this pestilence.
  much sooner than later. How much sooner? That depends on your support.
  She needs all the help we can provide her .
  
  Her work and research path that she has ventured upon leads me to proclaim that
  I HONESTLY BELIEVE THAT SHE IS THE "CHOSEN ONE"
  
  Please help Dr. Dong Feng Chen's cause, so she can help us.
  I KNOW she will have the CURE. She said that she was committed to it.
  There are no other words that I can express, that lead me to believe that her methods
  and processes can quite possibly border on - logically miraculous.
  
  After reading these links below, how can you NOT want to help her cause.
  
  Let me know your thoughts and or coments.
  
  Link:
  http://www.schepens.harvard.edu/news/dong_feng_chen_rpi_award.html
  Link:
  http://www.sciencedaily.com/releases/2008/03/080318113517.htm
  
  Tom
  --- SEE --- YOU ALL SOON??? (Probably)
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• Discounts on Makeup Services Help Visually Impaired Women Look Their Best
• Posted: 2008-10-08 15:16:18 By Kristine A
• Patti Pruitt, friend of FFB, made it a mission to identify a beauty spa and paramedic aesthetician in every major city throughout the U.S. to offer discounts on make-up services for their visually impaired clients.
  
  If you are interested in permanent make-up and would like to take advantage of the discounts for visually impaired women, visit www.blindnessga.org/servspons.htm. People who want to recommend spas and aestheticians in their community that may be amenable to discounts for visually impaired clients can send an e-mail to Patti at: patti.pruitt@comcast.net.
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• Epiretinal Membrane
• Posted: 2008-10-06 19:21:10 By Kenneth D
• Hi, I just had catarct surgery on my right eye and it didn't clear up the distortion I have. I also have an Epiretinal Membrane. I am going to the DR for my follow up on Wednesday. Has anyone had surgery to remove the epiretinal membrane and if so, tell me about it...
  Thanks!
  Ken
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• Seeing a specialist?
• Posted: 2008-10-06 00:12:29 By Judy I
• It has been a long time since I have posted. My husband and 2 of my 3 sons have RP, their ages are 14 and 19. Our 14 yr old seems to be progressing more quickly and is now doing mobility training thru his school and it has been wonderful. He just had an updated peripheral test done and is at 15 degrees now. My question, is it worth going to see a specialist such as Dr. Berson in MA? Would like to talk face to face w/ someone and ask ALL the questions that we have, etc. Also wondered w/ some of the new advancements in treatments, maybe it would be beneficial to get in a "database". Thoughts, opinions on above??
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• Son just diagnosed with RP
• Posted: 2008-09-30 14:33:34 By Christina F
• Hi there, I am new to all this and trying to see if theres a support group for parents of teenagers with RP. My son is 16 and has no side vision and cant see at all in the dark. We were told to take Vit. A, any other suggestions. Thanks
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• Tip
• Posted: 2008-09-29 03:03:15 By André L
• Hello all
  
  Go to www.clinicaltrials.gov and search "retinitis pigmentosa"
  
  
  
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• Long term disability
• Posted: 2008-09-22 18:47:55 By Mani I
• Hello:
  Can anyone give me information about LTD? I would like to know information like:
  a) When should you apply for it?
  b) How do you go about applying for one?
  c) Is it difficult to get it for legally blind people?
  d) What is the relationship of SSDI with LTD/
  
  Any information will be really helpful. I am debating about applying for it.
  
  Thanks,
  mani
  
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