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• Vitamin E
• Posted: 2007-12-15 01:41:54 By Judy I
• My nephew has RP and his Dr. told him that Vitamin E is not good for those with RP and one food he should cut out of his diet is nuts. Does anyone know if that is true?
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• CNTF progress
• Posted: 2007-12-14 17:32:08 By Carol C
• Oops! My brother got the day of his appointment wrong, it's Dec. 18, so we won't know till then if there has been objective improvement( in case anyone was expecting a posting today)..BUT... he notices every day that his vision is improved ( again, he had already lost 75% of his vision, so any improvement is probably noticable). He's 99% sure the implant is in his right eye, as he can tell a noticable difference when closing the left eye. But now he thinks his left eye vision is better,too ( other eye is only supposed to have had "sham" surgery). I have heard about a sympathetic type of blindness that can occur when vision is lost in one eye due to trauma. Sometimes the other eye will also eventually become blind. Has anyone else heard of this? If this is possible, do you suppose vision could improve in one eye that has not been treated,if the other eye begins to see better? Possibly the traumatic situation is because the optic nerve is damaged, and the damage somehow spreads to the other eye, I don't know. Of course, the placebo effect is very real, and possibly my brother is experiencing this. Anyway, I'll post next week when I hear how it goes. Carol C.
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• RP TESTING
• Posted: 2007-12-14 14:48:36 By Heather W
• I myself was recently told it looks like I have RP in association with Usher Syndrome. I saw a pediatric optha for years. I just saw another who refferred me to the retina specialist, who told me about testing and diagnosing. I'd try to see about taking your son to one also.The specialist said while it looks like RP, certain things are needed for a definitive diagnosis. You need to have an ERG and genetic testing done. Often, just looking at the eye cannot accurately diagnose. Your son may actually have a different problem.
  
  Also, don't be devastated! There are things being done to develop cures. In the meantime, there are things to help. Your son should be able to function close to normally. After all, I'm deaf/blind and I function pretty well. I'm in a mainstream school in the top 10%. Just don't let anybody try to use his impairment against him.
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• chatroom for rp??
• Posted: 2007-12-13 22:54:28 By gerlie g
• is there a rp chatroom here? if there is, when is its schedule?thank you
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• CNTF Non Update
• Posted: 2007-12-13 16:24:59 By Larry G
• To All,
  
  I feel like I should report that I had my 6 month follow up about 1 1/2 weeks ago. I had an acuity check, blood work and over two days 4 visual fields in each eye. No results were past on to me. The most information I got was that all the visual fields were consistant with each other. I alos have no personal findings to report. I haven't notice any change in my vision or visual field. However, in the past, when my visual field has gotten worst I have really noticed that either. Wish I had something to really report. I go back in 6 months.
  
  Larry
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• photopsias study
• Posted: 2007-12-13 13:05:21 By Marisa P
• Dear RPlisters,
  
  One of my colleagues, Dr. Ava Kiser, and I are trying to find out more about the occurrence of photopsias (flashes of light or “light shows”) among individuals with retinitis pigmentosa. We created a questionnaire that asks about your description of photopsias, possible associations and the impact. I know this topic has been discussed previously on this list, but there is surprisingly little systematic information that has been published in the literature on photopsias in RP. We are now hoping that many of you will be able to complete the questionnaire so we can learn more about this phenomenon and disseminate the information to others in the eye care and research communities.
  We created a web-based questionnaire for the purpose of collecting this information, and would very much appreciate it if many of you filled out this questionnaire, even if your experience with photopsias is very limited or if you have not experienced them. The questionnaire is anonymous, and will not ask for identifiable information other than a few general questions about your age group, gender, and race. The proposal to administer this questionnaire through a website has been reviewed by the Institutional Review Board for Human Subjects Research of the Johns Hopkins University School of Medicine, and they have given us permission to conduct this research without obtaining written informed consent from the respondents, since that would in fact void the anonymity of the questionnaire.
  We expect that it will take you 20-30 minutes to complete the questionnaire, depending on your reading speed or if you are using a magnifier, screen reader or other software.
  
  Please visit the questionnaire at:
  http://162.129.125.253/lvc/photopsias/index.htm
  
  We certainly welcome comments, and you may e-mail us separately so your questionnaire responses will not be identified by comments that may reveal your identity. Ava Kiser may be contacted at: abittne1@jhmi.edu
  Finally, we know that many of you have friends and relatives who are RP patients, but who may not subscribe to this list, and we would appreciate it if you could forward this e-mail to them. Thanks in advance for your help!
  
  Very best regards,
  
  Gislin Dagnelie
  Associate Professor of Ophthalmology
  Johns Hopkins University School of Medicine
  Delete Reply Forward Spam Move...
  Previous | Next | Back to Messages
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• Walking cane/stick
• Posted: 2007-12-11 15:00:57 By Eddie L
• Hello, does anyone know a good online site to buy the cane/stick. I had a fiberglass one that got broke about 15 inches off , and i had a folding alumimum can that the elastic just broke .
  Heard they also make it in grafite. which is better the grafite or fiberglass?
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• What do you do?
• Posted: 2007-12-11 07:33:45 By james n
• I'm into a point that i don't know the value of life. I also don't understand why we need to live.
  
  You? what is the purpose of life?
  
  What do you do if you feel alone in your life.
  No friends, no families to talk to.
  
  Or feeling no interest to talk to people. except this forum.
  
  
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• RP
• Posted: 2007-12-11 03:47:09 By Sanjeev V
• is there any treatment
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• Stem Cell Treatment
• Posted: 2007-12-09 06:12:31 By Liz S
• Hi there,
  
  Interested to hear from anyone that has participated in, or recieved a form of stem cell treatment for RP. I know it is being offered in a few places but want to hear from someone who has actually given it a go. (If there is anyone)
  
  cheers,
  Liz.
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• RP in children
• Posted: 2007-12-08 09:56:01 By Carrie N
• Hello my son is 10 years old and was diagnosed with RP 2 days ago. I am completely devastated. He was dx with buried drusen 5 years ago and has been monitored for that every year by a pediatric opthamologist. The retinal specialist also saw him and performed an retinal UltaSound 5 years ago. He just gave me the dx and I had heard of it before so he offered no other info and said he would see us again in 2 months. All he did was take a hx and briefly looked into his dilated eyes. He has no problems with night vision. Can he give an adequate dx by just looking into the eyes? Should i get a 2nd opinion? I read that it cannot be definitive without the ERG and that spots don't appear until the conditioned is worsened. We have no family hx.
  
  sincerely,
  Carrie
  Indianapolis,IN
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• tostitin
• Posted: 2007-12-07 04:52:17 By shelpy K
• any one here tried tostitin.. they claim to cure rp with money back!!!!! garauntee.
  also there is this centre n india called sreedhram they claim to cure rp. does any one know about this either.
  
  shelpy
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• So confused.
• Posted: 2007-12-06 19:48:43 By Robert W
• I just got diagnosed with RP earlier this week. I was told that I might have it a few months ago. I have no idea what to expect what to do. How to make it better. And just so many things running through my mind. I never knew anybody with RP before. The only person that does is a distant cousin. and everybody else goes talkin about it being hereditary. I might be loosing job soon in a few months which has been a dream of mine since middle school. Can anybody help or give advice. I keep hearin about so many people going blind. But before i heard that its rare for people to go blind due to RP.
  
  Thanks for all the help.
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• i Cant understand
• Posted: 2007-12-05 06:17:36 By Mose H
• Why goverment spending so much mony on war and killing people insted of helping impaired people like us if just 2% of the mony which usa spend on iraq war will maybe give us the normal sigh back that is horrible
  im sorry for my english...i hope that u in usa can tell those who are rich like bil gate and the holywood stars can donate for are FFB
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• My PROPOSAL
• Posted: 2007-12-04 19:46:33 By james n
• I'm planning a website to build like blindness.org but the objective is to collect donation and means of communication. So people in my country can also help donating money in FFB.
  
  I hope FFB will accept the money in the future.
  
  DARRAN what can you say?
  
  
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• Blind Mice Shed Light On Human Retinitis Pigmentosa
• Posted: 2007-12-04 17:15:06 By HAMZA A
• check this out can someone explain this i dont get it
  
  http://www.scientificblogging.com/news_releases/blind_mice_shed_light_on_human_retinitis_pigmentosa
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• CONFUSED
• Posted: 2007-12-03 16:57:49 By HAMZA A
• I HAVE KNOW GOT TUNNEL VISION IVE NOTICED SINCE SUNDAY WHEN I LOOK AT SOMEONES FACE I CAN NOT SEE THIER LEGS OR HANDS I CAN ONLY SEE THIER ARMS AND UPPER BODY I GUEES MY RP IS IN FULL EFFECT MY PROBLEM IS WITH MY JOB I AM A SECURITY GUARD AND I AM CONFUSED AS I DONT KNOW WHAT TO DO DO U THINK I SHOULD LEAVE MY JOB ? I WAS THINKING ABOUT CARRYING ON WORKING AND JUST COPING
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• rp
• Posted: 2007-12-02 13:33:54 By tehsin l
• hi
  my son also has rp he is 4 yrs. i am very depressed to see him facing problems in darkness.
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• Sector RP? Different? Prognosis? Any experiences?
• Posted: 2007-11-30 18:24:39 By Al U
• After consultation with my genetic doctor, she shared that the retina specialist has classified my RP as “sector RP”. Right now I see fine and don’t know that anything has changed with my eyesight. I do see flashes once in awhile and have some sensitivity when going from dark to bright environments but that is it. I have been reading some things on the internet and it sounds like sector RP has a pretty good prognosis compared to other forms.
  
  Is sector RP really different from typical RP?
  Has anyone here been classified with this and/or know what to expect?
  I’m 37 years old, no one in my family (up to grandparents) including my huge family of cousins has any RP. Would it more then likely be dominant or recessive?
  
  Some of you know my situation from previous postings. My then fiancée left me about 2 months ago one week after I got confirmed that I have RP. I am still very sad, disappointed, and hurt about losing her. I didn’t know about the sector RP diagnosis until a month ago and wonder if it would have changed things. I was very scared and probably scared her when I shared what I knew about RP. I just don’t know how to get over losing her and dealing with the RP news too. Still very depressed.
  
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• Earning Extra Money on Ebay
• Posted: 2007-11-30 16:09:48 By Steve S
• Hello Everyone,
  
  My name is Steve and I have RP. Thought I would share with everyone my EBAY STORE. If there are others that would be interested in selling on EBAY and would like to pick my brain please feel free to email me. Otherwise feel free to browse or shop at my email store located at the below link.
  
  http://stores.ebay.com/Your-Neighbors-Attic_W0QQsspagenameZMEQ3aFQ3aSTQQtZkm?refid=store
  
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• Earning extra Money on Ebay
• Posted: 2007-11-30 12:22:13 By Steve S
• Hello Everyone,
  
  My name is Steve and I have RP. I'm always looking for opportunities to earn some extra income and I decided to set up an EBAY STORE. I have had great success in doing this and would encourage others to consider this lpportunity. Its reall not that hard. Please stop by my EBAY STORE located at the below link and see what my store looks like for ideas for yourself. If you have any questions please feel free to ask me because I would be willing to help out others. If you type in the below link this will take you to my store. Steve
  
  http://stores.ebay.com/Your-Neighbors-Attic_W0QQsspagenameZMEQ3aFQ3aSTQQtZkm?refid=store
  
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• physical fitness can slow
• Posted: 2007-11-26 17:48:18 By Eric J
• I do believe the physical fitness can slow or even stop it. I am not a doctor. I have know about R P since I was 17. It controlled me Know I am the man. I have be physically active now for 3 years I feel I can see more I have had no change in the field test in five years. And I look good too.
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• surrendering your driving licence UK
• Posted: 2007-11-26 16:00:10 By HAMZA A
• HAS ANYONE SURRENDERD THIER LICENCE ? IF SO WAS IT VOLUNTARILY
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• Fundraising
• Posted: 2007-11-26 14:10:24 By Dan G
• Has anyone tried to start their own fundraiser to raise money for the FFB? Rather than just make my annual donations, I feel like I could\should do more. I would like to do a Spaghetti dinner, 50/50 raffle or something else to raise money, but I do not know where to start. If anyone has any experience in this area or has recommendations, please let me know.
  
  Dan
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• Questions about CNTF
• Posted: 2007-11-26 11:35:07 By Tammi M
• Hi, my name is Tammi and I just joined this message board today--it seems like a wodnerful resource. My mother is 67 years old and suffers from RP. She has been completely blind in her left eye all her life and has had no periphel vision in the right eye for many years. Over the last couple of years she has been progressively losing vision in her right eye. She is now at the point that the vision loss is really affecting her quality of life. We are desperate for a treatment or anything that can possibly improve her vision and/or quality of life. I know very little about CNTF--can anyone point me to the most comprehensive info on this treatment. Also is it true that CNTF is in the clinical trial phase and that all trials are closed? Does anyone know what trial phase CNTF is in?
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• Advice
• Posted: 2007-11-25 18:34:12 By Luis G
• Hi fellows,
  
  At the beginning of this year, when I was diagnosed with Cone-Rod Distrophy I felt so sad and confused. I had just graduated and obtained a Ph.D. in Robotics and Automation in Mexico City. I remember blind people walking by the Mexico City's streets, getting on and off the subway by themselves, crossing the streets and at that time I really was surprised of their capacity/ability to evolve by themselves with practically no aid, that encourages me to keep going ahead. Fortunately I found this site with very nice people whom I have learned so much and have been very willing to share your experiences with me, THANK YOU ALL!
  
  Well, the main purpose of this post is to ask you advice. At the beginning of this year I had 20/40 VA in each eye, then, I made changes and adapted myself to the new situation, and I thought with this VA I’m able to do what I have to do with no major problem (even I started to rely in my peripheral vision with success). However, my peripheral started to decrease and two blind-spots appeared at each side of my visual field in addition to the bull’s eye-shape central blind-spot. Almost a month and a half I visited an optometrist and told me that my VA was 20/80 in each eye. Since then, I feel that my VA has deteriorated a little bit more. Now, concerning to my job, I really feel insecure. I have obtained funding from the government and the private sector to carry out two projects, one related to basic research on telerobotics and the other one related to the industry. As you can see, the second project implies more responsibility and is more demanding 'cause I’ll have to visit the field. The question is: ¿should I tell my boss about my situation or just wait until my vision is really bad and quit? ¿What do you suggest me? I studied so hard to work on what I’m doing but life is very nonlinear and now I have to see what else to do for living.
  
  Please accept my apologies if I do not respond rapidly. When I get home all what I want to do is not to read, I prefer to attend my wife and my three years old boy.
  Luis G.
  
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• CNTF
• Posted: 2007-11-23 15:54:14 By HAMZA A
• CAN SOMEONE EXPLAIN TO ME WHAT IS CNTF ?
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• Living with RP in Pakistan
• Posted: 2007-11-22 04:39:37 By Salman H
• Hello.
  My name is Salman and I was diagnosed with RP around 24 years back when I was aged 9. Since then I have learnt to live and cope with it. However, more recently I feel that my vision has impaired further. Wanted to know whether there is any progress on its treatment. I heard about a Dr. Nolan in USA. Is he real and does he treats RP too. Also, is there any RP community in Pakistan to which I may subscribe.
  
  Best regards
  Salman
  Email. salman.haq@pk.ey.com
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• want get information
• Posted: 2007-11-22 00:34:17 By Detzi J
• Hi everyone,
  i'm living with Retinitis Pigmentosa, i want to know abot ECT-CNTF, how it work n how i get implant? Is it take grands?Will i get big surgery?
  Thanks for your attention
  Best regards
  
  Detzi
  detzipatricia@yahoo.com
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• want get information
• Posted: 2007-11-22 00:32:42 By Detzi J
• Hi everyone,
  i'm living with Retinitis Pigmentosa, i want to know abot ECT-CNTF, how it work n how i get implant? Is it take grands?Will i get big surgery?
  Thanks for your attention
  Best regards
  
  Detzi
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