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• Anyone who needs assistance
• Posted: 2008-03-02 18:09:14 By Elizabeth G
• Hello my name is Elizabeth and I a form of RP and have recently started my own business. Through this business I am helping those like myself and any others with any other form of disaliities. It encompasses Advocacy, advice, assisted learning and technology, and much more. I am currently in the processs of creating a website.
  
  If anyone has any feedback please email me. If anyone needs any services please email me.
  
  My information is - flamingoeyessee@aol.com or phone number is 203-912-0046.
  
  To take and always keep smiling.
  
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• Any Updates on the CNTF Clinical Trial??
• Posted: 2008-03-02 17:59:34 By Rick H
• Hello,
  
  Anyone have any updates, good or bad, on the CNTF implant clinical trial? I am going for my 6 months check up next week. I really haven't noticed any changes. Thanks,
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• RP homeopathy
• Posted: 2008-03-01 21:26:48 By Jorge P
• Do you have any experience with homeopathy to the RP treatment?
  What products do you use? What quantity?
  
  Eduardo
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• RP
• Posted: 2008-03-01 20:42:03 By ann h
• My mother experiences what she calls "rain" falling down in front of her eyes. Does anyone else experience that and do you know the cause of this?
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• Do RPers can do fitness?
• Posted: 2008-03-01 11:05:31 By Anna M
• Hi! I'm looking for advice. From one source I heard that intensive physical activity is detrimental for RP, but few doctors said that it's not true. I have RP and astigmatism. I want to start regular fitness exercises. What do you think about it? Thanks in advance :-)
  
  Anna
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• retinitist pigmentosa
• Posted: 2008-03-01 04:50:14 By RAJENDRA V
• Dear Doctors,
  My wife suffers from the above disease(as doctors told)since 20. Gradually she lost her sight and this time she can see only colours(but not easily)from both cores of her eyes. Means, she can feel the movements done at her right side or left side, she can't see any object in front of her. Please advise me what to do? I had consulted doctors at All India Institute of Medical Sciences,New Delhi and Sankara Netralaya,Chennai and many other eye specialists in India.
  -Rajendra Kumar Varma
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• Don't be a DUMB VOTER
• Posted: 2008-02-29 10:57:38 By andrew b
• I've seen a lot of posts where people write about one politician's views on stem cells and espouse that to be a reason to vote for said politician. While a position on stem cells is a good reason to influence a vote, if it's the only reason you vote, then YOU ARE A DUMB VOTER.
  
  I'm not here to say anyone is right or wrong (unless you're a single issue voter), just that you need to weigh risk rewards of a wide variety of positions and come to an educated conclusion about who to vote for. I have a thought and know the position of Huckabee, Obama, Clinton, and McCain on all of these issues. You should too.
  
  Good issues to consider.
  How soon leave Iraq?
  Leave soon, save trillions, but Iraq COULD (maybe not) become another religious state w/ anti-american sentiments with no one to regulate shiia v sunni killings.
  
  Universal Insurance?
  Can the government do a better job insuring everyone then a coordinated plan of regulating/mandating private companies to do it.
  
  Stem Cells?
  Should the government give grants to research around embryonic stem cells?
  
  Environment?
  Do we tax oil more, tax alternative fuel less, what is plan for energy independence (nuclear, wind, solar, etc)?
  
  Illegal Immigration?
  Do we give Amnesty to illegals? Do we make it easier to enter US legally? Do we deport? Do we fine employers of illegals?
  
  Abortion?
  Not really raised as an issue in debates, but as some candidate have a PRO-ABORTION (more than pro-choice) [look at voting records - one candidate voted to allow 14 yr olds to abort w/ no parental involvement]
  
  Education?
  Do you like no child left behind? Should we scrap it? Should we further it?
  
  Economy?
  Should we raise taxes? Should we limit earmarks? Should we penalize companies who hire overseas? What would happen if we penalize companies overseas? Should we bail out homeowners who over-bought?
  
  There are tons of other issues, but these are the big ones I think we should all consider. Read up, be educated, and come to a conclusion.
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• Race to Cure Blindness - Foundation Fighting Blindness
• Posted: 2008-02-29 09:21:52 By Kristine A
• Are you a marathon runner or competitive racer? You can use your racing effort to raise money for the Foundation Fighting Blindness through our Race to Cure Blindness program! To learn more visit www.RaceToCureBlindness.org.
  
  
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• Race to Cure Blindness - Foundation Fighting Blindness
• Posted: 2008-02-29 09:21:47 By Kristine A
• Are you a marathon runner or competitive racer? You can use your racing effort to raise money for the Foundation Fighting Blindness through our Race to Cure Blindness program! To learn more visit www.RaceToCureBlindness.org.
  
  
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• ERM
• Posted: 2008-02-28 20:28:49 By debbie t
• My daughter has RP, today she went to the ophtomotrist and was told she has ERM. Is there any conneciton between the RP and the ERM . Her appointment with the ophtamologist is not until the 7th of next month, does any one have any info about ERM?
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• Alphagan (brimonidine)
• Posted: 2008-02-28 16:15:06 By Michael F
• Hi everyone,
  There is a recent report of a small pilot clincal trial investigating the use of Alphagan (brimonidine) as a neuroprotective agent for RP. The results are modestly encouraging, but await further testing. I noticed that several years ago, someone on this message board had stated that their husband was given Alphagen by their doctor and was wondering if anyone else had tried it for RP?
  
  Here is the information for those science-types:
  Merin S, et al. J of Ocular Pharm and Ther, Vol 24(1), 2008
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• BIONIC VISION
• Posted: 2008-02-27 21:03:59 By james n
• http://youtube.com/watch?v=MhdG9D_ARWY
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• RP Docs in NY area
• Posted: 2008-02-27 13:26:19 By Michael F
• Hi everyone,
  I was diagnosed with CME secondary to RP over a year ago and have seen no improvement in my vision with Diamox (the cysts disappeared, then quickly came back). My long-time RP doctor (over 12 years) is on the conservative side (which I like), but I am thinking of getting a second opinion since the Diamox seems not to be working. Can anyone recommed an RP doctor they are happy with in the NYC area. Thanks for your help.
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• Abreviations ???
• Posted: 2008-02-26 13:42:43 By Vicki T
• I have been reading a lot of past posts on here and I'm not sure what all the abbreviations used on here actually stand for. (ERG, etc.) Would someone please help me out here? I realize it makes typing your messages quicker but some us may not have a clue what you're referring to. I'm sure, if you are reading this, Daran Z, you could give us a short list which could enlighten many of us readers. Your knowledge of "RP" has been like a fountain of information for me. Thank you very much!
  Vicki T
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• Would Valium or Klonopin affect RP?
• Posted: 2008-02-26 04:21:05 By Patrick C
• I may have to get on one of these drugs to sleep disorder (which I won't get into). Does anybody know if either of those could affect my RP?
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• hello...
• Posted: 2008-02-26 02:47:15 By shiela m
• hi to all of you...i just find that i had RP only this month..i also have hyper mayopia and astigmatism.. im only 21 years old..im here in the philippines..my doctor before said that i have only high mayopia and astigmatism, he didnt say that i have RP, so all those years i only knew that i ave have mayopia and astigmatism til i went to manila for check up to another doctor because we have plans of going to operation but im shock to discover that i have RP..my father also have the same illness, infact hes blind now because he underwent to an operation. i didnt know that my father has RP because we're not communicating, he's with he's own family and among he's children im the only one who has the same illness..
  my first symptom is night blindness...i didt see well at night or whenever im in the sark...
  this is the first time that i do search for this RP because according to my doctor there is no treatment yet, so i'm kinda hopeless at first but im now in the process of acceptance..my doctor also said that i'm not going to be blind, but my vision becomes poorer and poorer everyday,,he gave me medicines and vitamins to be taken everyday but they are quite expensive, you know we're not rich to buy all those medicines...i dont want to be pessimistic regarding this and im still hoping, besides im still young..i have lots of dreams, i want to achieve them but its hard because i cant see well, infact i always hit any object or person in front or beside me... its very hard..very very hard..
  i just hope and pray that i will not be blind and someday there will be a proper medication on RP...thanks..god bless us all...
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• eye hemorrhagging
• Posted: 2008-02-23 11:26:11 By Patricia B
• Hi,
  I have RP and during a routine eye examine the doctor notices that there was hemorrhaging on the ocular nerve in one eye. They have ruled out any cause and have no reason for it. has anyone ever had a similar experience and if so what caused it and is there anything to do about it? Thanks
  Pat B
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• cme
• Posted: 2008-02-23 08:38:43 By nancy j
• Hi: I just found this room. I am a 65-year old Psychologist with a diagnosis of cystoid macular edema responding to the person with the question about the dye test for cme. It is nothing to worry about. This is called the Flurochein. Not sure about the spelling. They inject a dye into your arm, then take pictures of your eye so they can see the vascular issues, etc., in your macula. It is painless and the only annoying thing is the light from the camera when they take the pictures. Hope this helps.
  Can anyone offer any information about CME? I have been treated for a year and a half. Started with drops, then injections into my eyelid (about 7) and when that didn't work, an injection of Kenalog into my eye (which caused a reaction of haze which lasted about a week). After that doc was reluctant to inject Kenalog again, so tried Avastin, which did not help. I am now on steroids (UGH!) and just started on Sulfasalazine (now seeing a rheumatologist as well). Please advise. I am more than a little depressed about this since I've been a healthy person all my life, and this has seriously hampered my life.
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• cme
• Posted: 2008-02-23 08:38:39 By nancy j
• Hi: I just found this room. I am a 65-year old Psychologist with a diagnosis of cystoid macular edema responding to the person with the question about the dye test for cme. It is nothing to worry about. This is called the Flurochein. Not sure about the spelling. They inject a dye into your arm, then take pictures of your eye so they can see the vascular issues, etc., in your macula. It is painless and the only annoying thing is the light from the camera when they take the pictures. Hope this helps.
  Can anyone offer any information about CME? I have been treated for a year and a half. Started with drops, then injections into my eyelid (about 7) and when that didn't work, an injection of Kenalog into my eye (which caused a reaction of haze which lasted about a week). After that doc was reluctant to inject Kenalog again, so tried Avastin, which did not help. I am now on steroids (UGH!) and just started on Sulfasalazine (now seeing a rheumatologist as well). Please advise. I am more than a little depressed about this since I've been a healthy person all my life, and this has seriously hampered my life.
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• felal cell transplant
• Posted: 2008-02-22 00:59:41 By doris p
• What is the latest for fetal cell transplants to treat RP? Is there a study using human subjects currently going on? Thanks for your help.
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• Cataracts and advanced RP
• Posted: 2008-02-22 00:53:24 By doris p
• I am 57 years old and I was diagnosed with RP at 18 years old. I have no central vision, some pockets of peritheral vision. My doctor is recomending I undergo cataract surgury.
  
  Is there anyone out there like me that has already had catarcts removed? Was there any improvement in your vision? Were there any complications after the surgury? Please describe your vision before and after the surgury. Thanks for your response.
  
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• i have a 9 year old girl
• Posted: 2008-02-21 19:47:31 By Diane B
• hello my name is Diane and i would like to talk to other parents who are going through the samething as i am
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• i have a 9 year old girl
• Posted: 2008-02-21 19:47:26 By Diane B
• hello my name is Diane and i would like to talk to other parents who are going through the samething as i am
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• Flecks of Pigment
• Posted: 2008-02-20 19:13:01 By Michelle W
• Our daughter (dd10) saw the retina specialist today. I thought we were home free - that her night blindness was nothing - until the very end of the exam. The retina specialist said he saw 'flecks of pigment' in dd10's peripheral retina. He sent her on for a VF test and an ERG.
  
  So is this 'flecks of pigment' in the peripheral retina consistent with RP? (As usual, I thought of a ton of questions after we'd already left).
  
  Is RP a wait and see game? We have no one else in our family with RP and so have no idea what to expect - if it does turn out to be RP. My sister has night blindness but she was told that it was because of her end stage Crohn's and a result of growths she has behind her eye.
  
  What's involved in an ERG? From what I understand, its a 2 hour or so test. I gather its not very pleasant.
  
  Any and all information very much appareciated.
  
  Thanks.
  
  Michelle
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• Breaking the news (?)
• Posted: 2008-02-20 14:45:55 By Vicki T
• Hi everyone. This is the first time I have ever posted on this message board. However, I have been reading it for the past few weeks or so and have really gotten alot of enlightening and helpful information from it. Thank you, everyone, I appreciate it. I feel the need to find support from others right now and this is a great way to do that, I hope. Let me start off with a little background info on my situation; I have RP and I was told I had it when I was in high school. I'm in my "late 40's" now. My vision is less than 10 degrees visual field and 20/50 centrl acuity (with corrective lenses) The only people that are aware I have RP are my family and of course my husband.I have only been married almost 5 years and have no children of my own but do have grown step-children. My husband's family do not know I have RP, nor do my step-children. I have kept this a "secret" my entire life since I first found out. I know you're all probably wondering why I never told everyone. I guess when I first found out, I just thought if I never told anyone, it wouldn't be true. Sounds crazy, I know. Maybe I was just in denial and this was my way of handling the devistating news. Back then, in high school, I couldn't even bring myself to tell my best friend. The only problem I noticed with my vision was it was hard to see at night or in dim light. I was able to get a driver's license and lived a normal life and was able to hid my condition very well. It's only been over the past few years where I've come to realize that "someday" I'll have to let my friends and the rest of my husbands family know I have RP. Which brings me to my big question.... How do I do that?! I am trying to figure out how to tell them. It's so hard for me, I don't know why. It's like I've had this dark cloud hanging over my head since I've known about it. Almost feels like such a burden on my shoulders trying to keep this a secret for my entire adult life. Did any of you feel this way? Some of my close friends are aware I have poor night vision and some even joke about me having "tunnel vision" at times (of course unaware of how right they are). It's so frustrating for me! Sometimes I think if I just went ahead and told everyone I had RP, my life would be less stressful and I wouldn't have to keep trying to hiding the fact my vision is so poor. Mostly my peripheral/ visual field and night blindness, is what gives me the most difficulty. I'm sure people must suspect I don't see very well at times. There's been embarrassing moments where it's obvious I can't see things but I'll just laugh it off or ignore the fact. Know what I mean? Am I being ridiculous? Can anyone relate to what I'm going through? Please give me some advice on how to break the news to my loved ones and others. Thanks for taking the time to read this long message. Sorry, I guess I just needed to vent my feelings. Thanks, looking forward to your replies....Rose 3
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• Sunglasses for RP
• Posted: 2008-02-19 19:24:15 By Madison D
• I am overwhelmed by the wonderful response from all of those who have taken time to care. I haved a new question. My 12 year old,who has RP for 3 years that we know of, wears sunglasses when she is outside, her reading glasses are slightly tented, she wears a hat in the summer along with sunglasses. What kind of sunglasses should be look for ( she constantly breaks or looses these) and should she wear the sunglasses when in very well lighted rooms?( basketball arena, church auditorium,etc..Thanks again. Please accept our thanks ahead of time. Jan (Madison's mom)
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• How long before you accepted it?
• Posted: 2008-02-19 00:01:48 By Brenda P
• Hello there,
  
  I was diagnosed today with RP. I have always had problems seeing in the dark but have only recently suspected that I might have RP.
  
  I was just wondering how long each of you went through the "grieving" process after hearing of your diagnosis, and before you finally entered the stage of "acceptance."
  
  Thanks.
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• Side Shields
• Posted: 2008-02-18 16:54:53 By Michelle W
• Are opaque side shields sometimes prescribed for RP? If so, why are they prescribed?
  
  Thanks!
  
  Michelle
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• anti-glare coating
• Posted: 2008-02-18 12:54:28 By mary o
• Does anyone have the anti-glare coating on their glasses or sunglasses? I'm curious as to how you like it or dislike it? I have it on my regular glasses and really don't seem to notice a difference. It is more expensive to have it added to your glasses. And it scratches more easily. I'm thinking about getting new prescription sunglasses and was wondering if I should pay the extra to get it.
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• duke university
• Posted: 2008-02-17 10:48:55 By terri h
• my son is 17 and has choroideremia. he had laser surgery 6 yrs ago to stop bleeding and now he is losing sight due to scar tissue creeping. the disease has not progressed other than night blindness. he goes to a local retina specialist and he has said there is nothing that can be done ( besides stem cells). i have been desparately looking for a dr who is familiar with the scar tissue forming after surgery and knows of any treatment for this. i am taking him to dr karl csaky in march at duke university, but it is an 8 hr drive. my question is, does anyone know of a dr that has treated scar tissue in the eye? and has anyone seen dr csaky?
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