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• CNTF update
• Posted: 2008-01-08 20:58:21 By Carol C
• My brother has his 3 month checkup for visual acuity, and had measurable improvement, even from his 1-month checkup ( they don't tell you any specifics so as not to compromise the research). He notices this, but is more impressed by apparent changes in visual field, which will not be examined until the end. He can read the newspaper again, as it seems like his eyes "work together". Before, it was like looking through binoculars that do not fit your eyes- a spot of vision in front of each eye with something always in the middle. He would read with one eye, and it was so difficult, he gave up. He has a wider area around the edges where he can see in the dark, and has an easier time catching something, although must still turn his head to do this. In March, he will hve an ERG, although I expect we won't hear anything but geheralities about that, either. Carol
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• CME
• Posted: 2008-01-08 19:44:16 By Luis G
• Dear all,
  
  First of all, I wish you have a happy new 2008!
  
  Secondly, does anybody know what the CME symptoms are? My eye doctor is suggesting me to perform a Fluorangiography to discard CME, what do you think?
  
  Greetings,
  
  Luis G
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• Jaws amd Excel
• Posted: 2008-01-08 19:26:53 By Barbara C
• Does Jaws work (or work well) with Excell, for both entering data and reading back data? Thanks. Barbara
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• RP?
• Posted: 2008-01-08 18:14:29 By Nicole D
• Hello everyone out there. I think I belong here. Back in Nov '06 my local small town eye dr. said "you are now displaying everything" I have been waiting to get into to see the local specialist. My appointment is Aug 12, 2008. Long wait eh? I am 37 on the 10th of Jan. We have RP in our family very stronly. On my fathers side, his mother had it. She had 4 kids, 2 girls, 2 boys, only the boys have it. Of my fathers kids also 4, 2 boys 2 girls, only us girls have it. Now I too have kids, 1 boy and 1 girl and only my son has it. How does this family history thing work? Does anyone know why 'our fathers have passed it to daughters only and Mothers to sons only?
  I grew up knowing I would one day have it but didn't really believe it I guess. My dad never could drive, very stubborn man won't to this day even us a cane, he'd rather rely on everyone else to help him. I grew up seeing the effects and don't know how bad my sight will get. My husband is very supportive especially since I can't drive at night anymore. Our kids 16 and 15 are great too. Our youngest does some night driving to help us all out. Here in Alberta Canada you can drive at 14! I have had to pick up some 'puffy paint' to make markings on certain clothes, having trouble with colours lately? I had corrective eye surgery on both eyes in 2000 to fix my nearsightness and vision went from -10.75 to -8.25 in one eye (left) and after 2 surgeries in the right -10.75 to -2.5. Does anyone know if this would have progressed everything?
  Am finding through what little research I can do on my own that there is not alot of help here in Canada for RPers like there is in the states, even all the clinical trials are down there, although I'd participate in a heart beat.
  Just thought I'd drop a few lines and say hello from a confussed newby...
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• hopeful about research
• Posted: 2008-01-08 09:36:11 By Colleen P
• P.S.
  Is everyone hopeful about the research? Colleen
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• parent support group
• Posted: 2008-01-08 09:33:39 By Colleen P
• Hello,
  Just wondered if there is a parent support group that I could ask some questions, etc. My 20 yr. old son was recently diagnosed with cone-rod dystrophy. He is doing ok so far, but I am having a hard time with it I'm afraid. Thanks for any help. Colleen P.
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• see this video ( way to stop rp ) ist true
• Posted: 2008-01-07 16:56:26 By ali k
• http://www.youtube.com/watch?v=X3xsdcOD3v8
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• see this video ( way to stop rp )
• Posted: 2008-01-07 16:53:39 By ali k
• http://www.youtube.com/watch?v=X3xsdcOD3v8
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• RE: 11yr old 'probably...'
• Posted: 2008-01-07 12:33:36 By wendy f
• Ooops! Sorry, I forgot to say in my first post I am aware of Usher Syndrome but don't know much about it. I've contacted 'Sense' the UK deaf blind charity and they will put a family outreach worker in touch with me.
  Wendy
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• 11yr old 'probably' RP
• Posted: 2008-01-07 12:29:50 By wendy f
• Hi, we're in the UK, pleased I found you here!Really hope someone can give me some tips/info/guidence..
  My 11yr old daughter has recently failed her Field Vision Test, twice. She has had an abnormal ERG. The doc said 'she has all the signs of RP...BUT without the pigmentenation'??!! He's referrred her to another specialist. He said what he is seeing and what the ERG shows is 'very rare, quite unusual' We're waiting for the next appointment.
  She is hearing impaired with a progressive (Unknown cause) sloping severe hearing loss. She was diagnosed age 3yr 8mth with a 45dB loss, it slips bit by bit and she is now 78dB. Both ears about the same. She has night blindness, bright light blindness and tunnel vision.Don't know the exact measurements yet tho, early days as far as diagnosis goes.
  Thanks in advance for tips etc. Wendy
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• An update on myself.
• Posted: 2008-01-06 21:59:19 By Bradley C
• I know sometimes simple things get people in our situation a little down. Being on disability is hard enough with such little income that most think home loans and other things are not possible. Well my wife and I got approved for our new house loan Thursday! I just wanted to tell you guys that are out there that even though your on disability don't let it get you discouraged. The bank didn't even question my income. They just had to have my Award letter from disability. They see it as a solid source of income. I've done a lot of research on this so if any of you need any information you can contact me on the board here and I'll be glad to help you with what I can. There are a few national programs to help people with disability with home loans and there are several programs for different states. Cali, Maryland, and a few others have great programs for disabled people. Anyway, I just thought I'd share that with you guys!
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• Question
• Posted: 2008-01-04 12:00:30 By maris s
• This is my first time posting. My 11yr old was dx at age 6 with RP. We just found out she also has a macular involvement(macualr scar). Is it possible to have both conditions? the other question is, what is large interior para foveal scotoma.
  Please help.
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• Question
• Posted: 2008-01-04 11:37:50 By maris s
• This is my first time here, my 11yr old daughter was dx at age 6 with RP. We also found out she has a macular involvement which i am confused. Is it possible for someone to have both conditions??
  May
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• transportation
• Posted: 2007-12-31 16:11:52 By Holly H
• Hi everyone my name is Holly and i was just wondering if anyone knows what states offer good transportation because I am planning on going to college next year.
  
  Thanks
  holly
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• Flashes - question
• Posted: 2007-12-30 12:32:15 By Mark L
• I've been experiencing flashes of light in my eyes on a continuos bases. Has anyone else had these symptoms ?
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• Dreams
• Posted: 2007-12-29 18:10:01 By Ryan B
• When you dream, are you blind (visually impaired) or can you see?
  
  In my dreams I can see perfectly fine.
  Anyway, I was just curious as to what you all have to say.
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• Has anybody on here considered this.....?
• Posted: 2007-12-27 04:31:25 By Tyrone A
• http://www.stemcellbiotherapy.com/therapy_eye.php
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• RP Symptoms in a Child
• Posted: 2007-12-25 21:32:43 By Michelle W
• What are the typical symptoms of RP in a child? Is it typical for the child to report that they can see trees that have Christmas lights on them at night but not other trees that are dimly lit by adjacent buildings?
  
  Thanks.
  
  Michelle
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• Questions: Vitiligo and the Retina
• Posted: 2007-12-23 20:52:52 By Michelle W
• Our daughter (age 9) has vitiligo and there are some studies that say vitiligo can be linked with RP-like retina changes. She's never seen well in dim light - used to fuss if we went into a dark restaurant and insists that all the lights in the house remain on, even during the day. Recently she's said she can't see in the dark. She also can't see in the bright sun and likes to wear a sun visor and/or sun glasses.
  
  Does sound like typical RP-like behavior in a child? Its really confusing because she also has brain-damage related visual impairment (with normal acuity). Her visual fields were tested when she was about 7 and there was a mild loss of peripheral vision.
  
  Has anyone heard of vitiligo being associated with retina changes? What should we do next? Our daughter's next ophthalmology appt isn't until June. Can a pediatric ophthalmologist diagnose this sort of thing? How do we know if its progressive or not?
  
  Thank you very much!
  
  Michelle
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• CNTF update
• Posted: 2007-12-23 19:20:23 By Carol C
• So sorry again! My brother had to reschedule his 3 month checkup until Jan.8(transportation and child care problems). His wife will not be working by then, so unless the weather is a problem, it should happen ( it's been extra cold and snowy here in Michigan for December- so much for global warming!)Carol
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• To Mark L
• Posted: 2007-12-22 21:31:10 By Bradley C
• Hey man, welcome to the RP club... only special people belong here and yes you are right... we rock the socks off of most. LOL Anyways, now that my attempt to be funny has fallen short once again I posted this message awhile back and since I couldn't come up wiht any good advice I figured the best method is you can learn from some of our personal experiences. So here is the post, please read it and grasp the concept. Take care man and if you need anything let me know!
  
  MESSAGE POSTED EARLIER THIS YEAR !
  
  The past couple of weeks I've had some real iisues with facing myself and some of the aspects of my life. I'm learing that although I have a eye disease that is currently impossible to cure, I can't let this control my life. You see not only does our disease affect the people that are closest to us, so can our attitudes toward our disease. I learned that it is hard enough on the people that love you the most just dealing with the everyday things that you go through with the disease. Then on top of that, for the most of us, we have a really poor attitude toward certain situations. So this in turn makes it twice as hard on the person that is helping us get through this time in our lives.
  I've also struggled with my beliefs the last couple weeks. Before I start I'm not trying to push God on anyone or any way shape or form trying to push a religon on you. These are my opinions. I've been raised a christian my whole life, and I attend church regularly. One thing that I'm learning is that for me to be able to live a happy well meaning life. I have to be able to accept that I have a eye disease and no, things aren't going to be the same for me as they are other people. This is opposite of what my church tells me to believe. I should believe that God can and will heal my eyes and that I shouldn't speak the eye disease over myself. So they kind of collide with each other. On one hand I need to learn to accept the disease and live my life to the fullest and on the other hand I need to live my life like I don't have an eye disease and proclaim that I don't. The times that my eyes have been prayed for is something crazy. I keep asking myself is there something that I need to do, do I lack faith, what am I doing wrong? This is becoming a real issue in my life.
  So saying all of that, I just wanted to let you guys know that our eye disease is hard enough on the people around us. They want a cure for us just as bad as we want it for ourselves. Let's take the inititive to realize that the people aroudn us hurt to. That other people have real issues in their life. Understand that when the person your walking with is only trying to help you when they tell you there is a step to watch for, that there is a person your about to run into, that it isn't wise for you to walk to the store alone, and my wife's famous "arm tug" when i'm about to run into something. They don't do these things to aggrivate us. They are trying to help and instead of us giving them grief with remarks like "I KNOW", "I CAN SEE THAT", "IT'S DAYLIGHT, I DON'T NEED YOUR HELP", "I CAN SEE JUST FINE". Let's just be thankful that we have someone to help us along the way.
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• Happy Holidays
• Posted: 2007-12-22 16:27:05 By Dave A
• Happy Holidays
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• Just learned that I have RP... merry x-mas
• Posted: 2007-12-22 14:32:23 By Mark L
• I'm a 44 year old professional in the IT industry that just learned I have RP. I thought something was wrong in the Feb / Mar timeframe but just got the final word now. I've been told that the "good news" is the older you get RP the slower the it takes over. Does anyone have any information on this ? Also, I was told by my doctor to start taking vitamin A immediately. Does this really work ?
  
  I'm currently going through an emotional roller-coaster ( as I'm sure everyone else has gone through ). Now that I know that I have the disease I keep thinking I'm getting worse by the day. On another note, everything I've read the problem normally starts out with loss of night vision. I don't have any issues with my night vision at all ( or at least I don't believe I do ). I have reduced my peripheral vision which was the first sign.
  
  I would appreciate anybody's help on this. I know I'm driving my wife crazy surfing the web 10 hours per day and having her join me on my emotional roller-coaster.
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• RP - New diagnosis for teen
• Posted: 2007-12-22 02:46:18 By Margaret M
• Hello,
  My 15 year old son has just been diagnosed with probably RP. His visual field is limited and he had an abnormal ERG. His eyes look fine to every doctor who has looked at them. We have no family medical history for him as we adopted him from Russia at age 2. I have 2 questions:
  
  1) If there are no structural changes to the eye does that mean he is at an early stage or could it be something other than RP - perhaps optic nerve?
  
  2) Today he said that for about 5 minutes today his vision looked like he had a red filter over his eyes. He could see the same amount as before it just looked red. Is this just another factor in RP of should I have his eyes checked again?
  
  Thanks.
  Margaret
  
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• So lost, and need a helping hand!!
• Posted: 2007-12-21 16:10:24 By Terri S
• The man i am in love with and have picked to spend the rest of my life with was told he has RP. he told me early into our relationship so it was not a shock later on...
  
  But we live in a small town in Louisiana, and other than seeing a regular doctor he has done nothing... he strongly believes that if you don't talk about it, nothing is going on and nothing is happening!! i can't stand for him to live like this anylong! i want him to have the best treatment and the best help!
  
  I know the odds and i love him even more for the man he is... he works away from home and other than extremely bad night vision, which he does get around very well i never noticed till he told me, he tends to appear normal...
  
  Any good doctors located in the south united states?? if not who is the best??? i had never heard of any of this until a year ago, and what i have learned has been on my own simply because i don't want to rub salt in his wounds!
  
  he has agreeed to go anywhere and do what ever i find out to be helpful!!! so really anything at this point would be great! but mostly i just want him to see a doctor that specalizes in the condition, not just some average joe!!
  
  Thanks soo much!!!
  ~!Alecia!~
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• CNTF 3 month Update
• Posted: 2007-12-19 11:02:10 By Rick H
• I had my 3 month visit for the CNTF late stage implant study.. My vision score in my right eye was an average of 2 letters lower than at 1 month. The right eye score average was l.5 letters lower (Average of 3 tests) than at 1 month. Statistically I would say my eyseight is about the same as before I had the implant. Even my intial screening visits varied by 1 or 2 letters each time.
  
  I do get a few more "blue light" halo flashes in my left eye every once and a while. I always had these..they just seem a little more frequent. Also, in general my eyes seem a little more light sensitive since the operation.
  
  
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• new diagnosis of 4yr old- Advice
• Posted: 2007-12-18 21:09:43 By Tab V
• I am hoping that maybe someone could give me some advice on what I should be doing to help my 4 yr old son. He also has mild optic nerve hypoplasia and now they have added RP. As close as they can tell his vision is 20/80 in both eyes and cannot determine peripheral at this time due to his age. If anyone has any advice because at this point I don't even know or understand how visually impaired he is as to what services he may need or be eligible for. He is night blind for sure and on dark cloudy days and such. He is so resilient that I am not sure how he is actually affected and does fine at home, but I have no idea what the world looks like to him. His hearing has intensified and memory is out of this world. Is this the other senses starting to pick up? What measures may need to be in place for him at school? Does he need to start learning braille and white cane? Thank You!!!
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• rt
• Posted: 2007-12-16 12:19:57 By karen b
• i have met somebody who suffers from rt, i want to get to learn as much as i can about rt and understand the disease from his viewpoint - can anyone help me???
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• ERG and VER
• Posted: 2007-12-15 07:11:14 By melissa d
• i was diagnosed to have RP four years ago and i've undergoing eye tests such as ERG and VER, are these necessary? I mean a have been comparing the results and they were just the same...can i refrain from doing such eye tests annually and just do it every two years?
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• RP
• Posted: 2007-12-15 06:51:38 By melissa d
• what are the recent researches on RP?
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