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• CNTF (NT-501) Alternate
• Posted: 2008-09-18 15:16:36 By Thomas P
• Hello all...
  As stated before, has anyone looked at Dr. Dong Feng Chen's work on "Awakening Retinal Stem Cells"
  published in ScienceDaily March 18, 2008? She is from the Schepens Eye Research Institute (Harvard).
  This method is better than NT-501.
  
  Link:
  http://www.sciencedaily.com/releases/2008/03/080318113517.htm
  
  Comments?
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• Question-Autoimmune and RP
• Posted: 2008-09-16 09:39:19 By Liz J
• Has anyone heard that potentially some RP is possibly in some cases from the autoimmune system attacking the eyes? Liz
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• Vitamins what is the newest and latest advice?
• Posted: 2008-09-15 12:54:22 By Liz J
• Could someone tell me what vitamins you are suppose to take? I was told to take 25000 iu of beta carotene, DHA, lutein, 800 iu of Vitamin E and 1000 Vitamin C but I've told of recent vitamin E is not good in 800 IUs so am concerned and 25000 of beta carotene seems high? Was not recommended Vitamin A palmitate 15000 ius? Not recommended anymore? Liz
  
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• ?
• Posted: 2008-09-12 02:28:03 By n c
• What happened to the posts from this month? (Sept)
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• Removal of floaters via vitrectomy
• Posted: 2008-08-26 19:46:30 By Gail H
• Has anyone had a vitrectomy to remove floaters? If so, did it effect your RP negatively? Thanks for your responses.
  Gail
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• Macular Pucker surgery
• Posted: 2008-08-26 00:40:56 By Gail H
• Hi everyone: I have known about my RP for 26 years. In 2000, I had surgery to remove a macular pucker (a membrane, similar to a cataract, that forms over the retina), a procedure that usually promotes vision improvement (in 85-90% of patients) HOWEVER that refers to individuals WITHOUT RP. The surgery did nothing to improve sight in that eye, in fact, it got worse because I can no longer read with that eye, a great disappointment. I now have one developing on the other eye. The doc wants me to do the surgery again but if it also doesn't work, I'll virtually be blind. Here's what I want to know... has anyone with RP had sucessful removal (improved sight) of the macular membrane? Please contact me directly or post a response. Many thanks
  g_handle@bellsouth.net
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• Ativan helps vision
• Posted: 2008-08-24 19:10:17 By Thomas P
• I take ativan for panic while riding in a car due to vision loss. It seems to help. Anyone else taking ativan?
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• New Board
• Posted: 2008-08-24 11:11:56 By Marisa P
• Hello everyone,
  
  I haven't been on for a few days so this caught me by surprise. I can't decide whether it'll be better than the old one, but hope some of you will start posting. By the way, to post a new message, you have to scroll all the way down and, of course, you must be registered. I had forgotten what my password was, but luckily I had saved the message.
  
  Hope everyone is doing well.
  Marisa
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• airports & cane
• Posted: 2008-08-20 20:43:10 By Janet F
• I had training with a cane many years ago but have only used it a couple when shopping at xmas and the stores were wild. I go everywhere with my husband and don't need to use it now - but am taking a trip next month and flying alone. I worry about carrying my cane, then sitting down and reading a book. My central vision is perfect but my field is very narrow. Can I take it on the plane or will it have to be checked? I'm very independent (except for driving-lol) and still hate asking for help. Before getting married, I flew once a month into Baltimore and noone ever knew I had a problem (except the couple i bumped into). Going into a new airport alone has me apprehensive so would appreciate any tips you have. thanks.
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• Test Message from Tina
• Posted: 2008-08-05 18:05:45 By Tina C
• This is a test
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• drivers licence question
• Posted: 2008-05-06 09:34:39 By randy m
• I have 20/60 with glasses and have moved to Oregon recently. The requirements say that they need 20/70, so does that mean i can just walk in and give the test? I will not be able to read all the lines as i am not 20/20 so will i need a doctors certificate for that case or or will they accept it if i read up till 20/70? Any help is much appreciated?
  
  http://www.dmv.org/or-oregon/medical-considerations.php#Vision_Test
  
  Thanks!
  
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• Anyone in the Atlanta GA area?
• Posted: 2008-04-30 08:47:29 By Bridget S
• I am trying to find a good specialist in my area. I would like to know if anyone can recommend anyone. I looked at the specialists on the FFB website, but it states that they do not knowanything about the specialists, only that they asked to be put on the website. I would appreciate any help with this.
  
  Thanks,
  Bridget S
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• CNTF Question
• Posted: 2008-04-29 19:25:51 By Joshua D
• I am in the early stage study of the CNTF implant. One of my pupils is very constricted and the other, to compensate, is always very dilated. My Doctor told me that this would eventually correct itself, but it has been almost 7 months. I was just wondering if anyone who has had the implant longer had this problem, and if so, did your pupils balance out eventually? Thank you in advance.
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• Lasik
• Posted: 2008-04-29 17:09:49 By Diane B
• HAs anyone had this done and what was the outcome? I do not know exactly the form of RP that I have but it is slower than other RPs. I can still function and am considering this surgery. Thx db
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• SSDI
• Posted: 2008-04-29 14:43:33 By Becky N
• I do not post here often but read messages alot. I have seen alot of previous posts about applying for disability. I decided to try it myself back in Jan of this year (I had quit working back in Nov) and found out today I was approved. So for all of those out there that are thinking of applying and have not done it DO IT! There is a very good chance you will get approved the first time and quickly too.
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• Retinal Specialist
• Posted: 2008-04-28 14:51:06 By Bridget S
• Hello,
  Where do I go on FFB website to find a specialist in my area?
  
  Thanks,
  Bridget S
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• teen daughter diagnosed
• Posted: 2008-04-28 13:41:32 By Carol W
• Does anyone know of a support forum for parents of teens with RP in NW Indiana? Just want to throw this out there-anyone with RP or any other visual disease/condition is so capable of doing anything and everything and doing it well!! That's the attitude we live with for my daughter and us as her parents. Have a great day everyone!!! C
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• Breakthrough /Gene Therapy
• Posted: 2008-04-28 06:56:37 By mohammed s
• Hi all
  I got an exciting email few minutes ago from the Foundation Fighting Blindness .I think you all got it as well.Please raise the topic here and discuss about this breakthrough of gene theraphy.When are we going to get this treatment?
  I especially look forward to hear from Darran .
  Darran you there?? knock !! knock!!!
  Everyone stay fine
  
  Salam
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• gene therapy news
• Posted: 2008-04-27 17:26:32 By julia b
• http://news.bbc.co.uk/1/hi/health/7369740.stm
  just to forward what is being said about it over here,
  Julia.B
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• Live Chat
• Posted: 2008-04-27 16:36:02 By Christy P
• Hello,
  When does the RP live chat meet?
  
  Thanks,
  Christy
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• Trimetazidini dihydrochloridum and RP?
• Posted: 2008-04-26 15:34:03 By Anna M
• Hi everyone! I have a question.
  
  Lately my vision got worse and my ophthalmologist prescribed me medicine in US called Trimetazidini dihydrochloridum. I don't think this is a cure. My doctor said that this medicine will broaden cells in my eyes and improve blood circulation. I have some doubts over taking this medicine, because I've never heard about prescribing it for people with RP. What do you think about it? Do you think it can do me any harm?
  
  Anna
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• fish oil
• Posted: 2008-04-25 12:55:06 By mary o
• My dr. suggested I take 1000 mg. of fish oil two times a day to help lower my trigycerides. Does anyone here take this? If so, has it worked for you? And does it have any side effects regarding rp?
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• Bionic Eye
• Posted: 2008-04-21 13:26:47 By Dan G
• Interesting Article....enjoy!
  
  http://www.timesonline.co.uk/tol/news/uk/health/article3790683.ece
  
  
  I try not to get my hopes up. There is still lots of research to be done.
  
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• RP and cataract surgery
• Posted: 2008-04-17 18:05:36 By barry d
• My wife has cataract removal planned and has been
  told by the doctor that cataract removal is not at all dangerous for a RP patient. No danger of loss of eyesight as a result of removal. Has anyone had this done and if so is the doctor correct in his evaluation.
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• Stemm cells treatment
• Posted: 2008-04-17 17:59:52 By Ricardo S
• Have anyone done or heard something about this new stem dells treatment that is currently being done?
  
  Site pf Pharma Inc.:
  
  
  Treatment that is being done:
  
  
  If anyone knows something please tell me, because I so interest in do this treatment.
  
  Many thanks, Ricardo from Brazil!
  MSN to contact: cado.bs@hotmail.com
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• hope is available
• Posted: 2008-04-16 10:10:46 By tennessee t
• the accupunture clinic in greenville south carolina has done wonders for me i have rp, i believe the earlier people seek this treatment the better the outlook, at least this has helped me, and i will be going back in 4 months for more treatments, it may sound impossible for this to work but i am proof it does, it may not do the same for everyone, but i believe it will help. my eyesight went from 20/200 in left eye and 20/54 in right eye to 20/78 in left and 20/52 in right in 2 days i see the difference. the phone number to this clinic is 864-232-7275, to me i didnt have anyhing to lose anyway , i ended up gaining from it, they do not claim these treatments to be a cure, but for me and others it has been a successful treatment. good luck to everyone signed blessed
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• CNTF additional info
• Posted: 2008-04-15 20:21:24 By Carol C
• Another positive to add! My brother ( X-linked cone-rod dystophy) is 6 months plus into the CNTF implant study, experiencing vision improvement.My sister-in-law was very recently at an appointment with him, "caught" him reading a paper, reading along like anyone else, holding paper at arm's length. This, in the man who had given up reading, as had to continuosly turn his head ( field of vision losses), could only read one word at a time, and it was all just too hard and time consuming.Amazing!! Carol
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• Interesting study
• Posted: 2008-04-15 20:07:02 By Carol C
• I just read a report on the web( 2008, so very recent publication)of a set of fraternal twin males ( 2 different eggs, as closely related as any siblings)both inheriting their RPGR mutation from the mother. But one had X-linked cone-rod dystrophy ( cones effected more than rods, visual acuity, color vision problems early with night vision only effected late in course), and the other had typical XLRP, starting with loss of night vision and loss of peripheral vision. They have long known that the same mutation can take a different course, some in the same family losing vision sooner than others, but this seems quite different. It might explain why my brother has all the classic symptoms of XLCRD, legally blind at age 34, doesn't drive at all, while a 4th cousin with same exact mutation (DNA test) has typical RP symptoms: no night viaion, peripheral vision issues, but still driving during the day at age 44, central vision clear. Why would the exact same amino acid "mistake" effect the cones primarily in one person, and the rods in another? I guess they suspect another genetic compnent, but if they have to search the whole set of chromosomes for it, it doesn't seem likely we'll know any time soon. Carol
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• ozone therapy
• Posted: 2008-04-14 05:46:49 By julia b
• Does anyone know much about this?is there any truth in it?
  http://www.ozono.cubaweb.cu/resumenes/medi32ing.htm
  Julia
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• Random thoughts?
• Posted: 2008-04-13 22:10:11 By Bradley C
• I've sort of been stuggling with myself again lately and I wanted to find out how you guys dealt with some of the issues I've had. If you have them of course lol. I'm still young, 25 years old if anyone really wants to know. Being what my eye sight is, a career in anything that my heart truly desires to do is not possible. My heart is so geared toward doing public works such as a Police officer that it just rips me apart inside knowing I can't do it. I just sit and think sometimes, "They've got to find a cure, and fast." It's almost like you can see it slipping away from you and there's nothing you nor anyone else can do about it. So how do you guys deal with have such a passion for something and can't do it?
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