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• new user with rp
• Posted: 2007-08-24 11:21:55 By Sarah E
• hi my name is sarah i'm a new user and i have retinitis pigmentosa. i was just wanting ot chat with some other people with retinitisis pigmentosa.
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• 4 year old son with RP
• Posted: 2007-08-23 22:40:34 By Lis A
• Hello everybody. I am Lis from Panama. I have a 4 year old son that is diagnosed with RP and I am devastated. I need someone to talk to and give support. Does anybody have a son diagnosed so early. Please help me.
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• worse in the morning
• Posted: 2007-08-23 09:15:58 By julia b
• is it just me or do a lot of you find your vision is much worse in the morning?
  Julia
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• HELLO IS ANYONE OUT THERE
• Posted: 2007-08-22 23:29:29 By amanda m
• hi my name is amanda i am 18. i live in the usa. illonio to be exact.
  i have diagnoised since a very young age. and am still very young. cept i have NO perphial vision whats so ever. they say my rp is progressing very fast. they think i will be blind by 30.
  i just want someone to talk to. you know someone who knows what is going on.
  MY PARENTS DONT UNDERSTAND
  MY SISTER HAS IT BUT SHE IS TEN TIMES BETTER THEN ME
  I HAVENT EVEN BEEN ABLE TO TELL MY BOYFRIEND YET.
  qustions go through my hesad all the time. what will i do if i go blind what will i do.
  im just looking for someone who knows. and just for new friends
  please email me at
  lilmerbaby@yahoo.com
  thanks cant wait for the emails
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• Facing Myself
• Posted: 2007-08-22 13:51:39 By Bradley C
• 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.
  Sorry I'm rambling but.. I just felt like I needed to get some things off my chest.
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• Acai berry
• Posted: 2007-08-22 09:33:02 By Tim B
• My wife's grandfather has been recently taking the juice MonaVie. Its main ingredient is the Acai berry, which has many many nutritional benefits, and also has 19 other juices. The Monavie has helped him feel not so sore. It helps inflammation, heart, cholesterol, etc. But its very expensive. A month's supply is between 100-140, depending where you buy it. You can buy just the Acai capsule for a lot less.
  
  Has anyone heard of Acai and do you think it would help the RP?
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• ARE WE FAR AWAY
• Posted: 2007-08-22 06:00:57 By Mose H
• from a cure any good news about this ...this rp is destroying my life totaly
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• Hi
• Posted: 2007-08-22 03:34:10 By hamid a
• I am Hamid (m) 19 from iran and have RP. My brother and sister have it too.I really afraid because my sister is PERGNANt.i dont know if her son give this problem or not.
  Now i am a fresh man and study sience and food industry. If some one want to be my freind email me plz
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• CNTF screaning successful
• Posted: 2007-08-21 20:39:36 By Andrew S
• Well due to Neurotech lowering their late stage cntf trial from 20/80 down to 20/63 I hae been accepted. Now I'm just waiting on my blood work, UA, and eye photos to come back for the finally approval. Providing I get the final approval. I will be implanted in late September. I hope the other cntf ers are doing well. I would be very interested in knowing what changes you've noticed after the implant.
  Andrew
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• just diagnosed age 34
• Posted: 2007-08-20 15:38:19 By Heather S
• Hi,
  
  I am 34 years old and have just been diagnosed with RP. I do not know how and got it. There seems to be no one in my familiy that has ever had it. Where do I go to find out how I got RP? Is there really no one to determine how long it will take for me to be classified as leagally blind?
  
  Please email me at simpson@lenape.k12.pa.us and put in the subject RP so I do not delete the emails.
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• I am a new member ....
• Posted: 2007-08-18 11:50:12 By Aymen M
• I'm a new member of this website and am a 19 year old male from Melbourne, Australia. I suffer from Retinitis Pigmentosa and have joined this organisation to meet other people who have the same condition and to share my experiences with them. I also joined this site to keep a close eye on the stem-cell research being conducted all over the world in hope for a medical break-through
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• RP
• Posted: 2007-08-17 18:43:15 By Janet M
• Janet M
  I was dignosed with RP on 8/14/07 and i was given vitamin A as therapy 18,000 IU. I really do hope for a cure
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• ELECTRO ACUPUNCTURE
• Posted: 2007-08-17 04:09:07 By rp c
• http://www.firatlilaser.com look this adress. there is a PDF file about Retinitis Pigmentosa in this site, TEDAVÝLER/GEN TEDAVÝSÝ (RETINITIS PIGMENTOSA) click here and look files..
  I think it is very good news for us.
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• where the research has reached
• Posted: 2007-08-16 03:37:01 By Nitesh B
• hi everyone im nitesh 19 m dubai . i would lyk to noe abt the results of the research i.e were the research has reached n also wanna noe abt sum things which can slightly improve My eye site.
  plz reply mee bak
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• RP chat room
• Posted: 2007-08-15 21:17:46 By Jane D
• Hi there everyone,
  tonight is when the people that have RP chat on here and for the last several weeks no one comes to chat
  
  It is on Wednesday nights and starts around 7 p.m. Try to come and chat with us.
  Jane
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• finaklly a school teacher
• Posted: 2007-08-14 18:59:41 By John F
• I have officially become a school teacher. I graduated with my BA three years ago and substituted and was an aid. RP diagnosis about 15 months ago at age 49. Have remained relatively positive (lots of inspiaration on this board)about the entire situation. Very careful in the hallways and as stated previously do a lot of scanning whevere I go. I will try as long as I am capable. Nobody in the school knows. Last check-up about 30 degrees in right and 25 in left (does that make sense?) with 20/30 and pretty good central vision (except for floaters and a slight blind spot in left eye 1 o"clock centrally). Left eye does scare me and do occasionall have grey outs (if that makes sense. Anyway as my good friend Tony (just passed away at 81 yrs young, criplled but always smiling, "keep on truckin"). Will do so till I can't any more.
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• White spots on Optic Nerve
• Posted: 2007-08-14 14:56:39 By Janet B
• My doctor told me that with this visit he could see white spots on my optic nerve. When i asked him what this meant, he just said that it was another symptom of my form of RP. Does anyone else know about this - and does it mean anything? Does it mean that my optic nerve is degenerating or anything like that?
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• Second change at CNTF trial
• Posted: 2007-08-13 20:34:32 By Andrew S
• Recently I was contacted after I was told that my vision was too good to be in the study. I guess now the study has opened up until its full. So I am being reconsidered for the trials. I have an appointment next week to go through the screening again. Fingers crossed.
  Andrew
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• Skylights
• Posted: 2007-08-13 14:53:14 By Deborah B
• Does anyone have a skylight in their home and do you have any problems with it being too brignt, especially in the summer months when the sun is directly above? We have been looking at the Solatube brand skylights to brighten up our hallway and want to make sure it is not too bright. It does offer UVA, UVB and UVC protection, but I am unsure of the recommended levels especially for RPers.
  
  Any feedback from someone who has more late stage RP would be helpful.
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• Amusement Parks
• Posted: 2007-08-13 14:50:13 By Darran Z
• Hi Gang!
  
  I think there has beena couple of posts previously regarding this but let me repost.
  
  Didn't some of you complain of being "dizzy" when getting off any amusement park rides, especially roller coasters? I remember that some of you have complained that there was dizziness and loss of coordination for a few minutes. Am I correct?
  
  I went to a park Saturday and went on three different roller coasters. The only problem I had was the one ride because the cars come back inside a shelter so I was coming from bright light to what became almost complete darkness until my eyes could adjust. But other than that. I did not feel dizzy or loss of cordination.
  
  Darran
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• Fluorescein
• Posted: 2007-08-12 23:58:07 By Nikki s
• Anyone had this injection when being evaluated for CNTF stufy?
  
  thx!!
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• My new worries and my CNTF ordeal
• Posted: 2007-08-11 18:01:29 By carolina s
• Since today was a rainy day, not much to do I decided to clean up my old emails...and what would you know I ran into this study from 2005 stating a conection between light exposure and retinal damage . I had forgotten about this one !!! after I finished reading it I started freaking out !!! It says " Investigators recommend that physicians who conduct retinal examinations of patients do so as quickly as possible and with little light as possible. They also recommend retinal photography be AVOIDED and light exposure during intraocular surgery minimized "..... I almost fainted, I have had more photpgraphies taken of my eyes than Paris Hilton getting out of jail...and not talking all tthe constant examinations and all that light during surgery .... wouldn't they have the ethical and legal obligation if that is the case to share that with me ? i am not kidding you I am thinking about withdrawing from the study !! All this time I thought there was a good chance to improve my eyesight but now with all that light exposure could I be reversing the beneficial effects from the implant ? and I do not have an implant in the other eye either and that one has been submited to as much torture as the implanted eye.
  I do not know what to do...
  carolina
  
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• The price for CNTF,,,
• Posted: 2007-08-11 01:46:26 By heather p
• As many of you know I was diagnosed in Jan. with RP, and then had my implant surgery for CNTF in April. Relativly quick in the RP world. I knoq how blessed I was to get in on it. That being said, we had to agree not to try to have anymore children (have a 16mo old now and a miscarriagein 2005)for 2 1/2 years. Because we had fertility issues and it took 4 years to get this one that was a HUGE consideration before I even agreed to the implant. I would be 33 by the time we could try again.
  
  I found out today that not only do I have a mass on my ovary that is the size of a football, I also have to have a complete hysterctomy, and they are doing it next week. Maybe 10 days but they don't want to wait too long for fear the mass will rupture. They don't know at this time if it is cancer, but they will have an oncologist in the OR just in case. So, at 30 I have been told I have RP AND I am losing all my reproductive organs.
  
  I knew I was lucky to get in on the trial but I did not know that this would be the price I'd have to pay. I always felt like I was waiting for the other show to drop, and now I know the consequences. I know that's all metaphysical like-one good thing, one bad thing, Karma blah blah blah, but anyway, I just wanted to share, things are pretty **** righ now and no, it has NOT been a good day! :( I'm on alit of drugs so if this doesn't make sense, sorry, Im going to bed. Night Noght all.
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• Would you be interested in...
• Posted: 2007-08-10 23:40:09 By Mudhaffer A
• Hello Every body,
  My name is Mudhaffer and I am visually impaired person who has RP. I am doing a survey from 1 question
  would you be interested in a dating service for the blind and disabled to date and make friends. ? please let me know what you think since I am planning to build a website for blind and disabled people and others of course to bring us together.
  I look forward to hearing from all of you soon
  Thank you so very much and please email me at:
  almomani@optonline.net for suggestions or ideas or comments .
  Kindest regards,
  Mudhaffer
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• ELECTRO-ACUPUNCTURE
• Posted: 2007-08-10 08:10:41 By rp c
• Hello everone. Is the elctro-acupuncture a cure for retinitis pigmentosa. Do you know anything?
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• IT'S GONE :)
• Posted: 2007-08-10 01:05:59 By james n
• I'm not very depressed anymore... :)
  I saw her last sunday after 7 years in a mall.
  And yes she has a boyfriend or should i say a husband.
  
  And the man looks very decent and responsible, i'm very happy for her. Now i know she is in good hands, i hope. :)
  
  And yeah she saw me also and we have this
  'eye to eye' contact again, and no we don't talk
  just eye to eye contact and i did not tried to get near to her to avoid messing their relationship.
  
  I'm just praying that the man has the same feelings and intentions for her, and a pure love and not to take advantage of her.
  
  Now my mind is free, it is one on one now,
  it is me versus my RP.
  
  I also promised myself to not to fall in love anymore because it's hard while you have this RP freak disease.
  
  I would like to thank also for the people that supported me here. Thank you! :)
  
  Kristine, Darran, and everyone else... thank you!
  
  I would also like to request a suggestion for everybody here:
  
  Please if someone else is depressed here please don't forbid them from posting their messages. Perhaps this is the only way they can express themselves, and maybe if we don't have this forum i'm already dead and the others too...
  
  I think posting my depression messages here helps because some of you guys here listen.
  
  Ok, here is the music for that :)
  http://youtube.com/watch?v=EGtTblTR0YU
  
  THANK YOU AGAIN! :)
  
  
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• Need help with filing for disability
• Posted: 2007-08-09 20:42:44 By Gilesa B
• I am filing for social security disability benefits for the first time. I am doing it online and have gotten to the step of filling out a disabilty report (ssa-3368).
  
  They say I need to provide them with every doctor and test I have ever had. I have had RP for 27 years and I can not remeber the doctors name and the tests that have been done.
  
  What do I do to answer this question?
  
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• Movie Theaters
• Posted: 2007-08-09 20:32:30 By Michael Z
• Does anyone have trouble watching movies at the theatre. I can't follow the actors in the film anymore, especially action scenes. It has nothing to do with the darkness. My girlfriend gets me to the seat but I just can't follow the film. Its not even enjoyable anymore! Anyone have this problem? Any suggestions? Thanks
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• CNTF Time Table?
• Posted: 2007-08-08 13:34:19 By Michael Z
• Does anyone have any realistic time table of when the CNTF Therapy will be made public to individuals? Two years from today? Three years from today?
  Thanks
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• Anyone work while on SSI?
• Posted: 2007-08-08 13:09:15 By Mary P
• I have RP and have been collecting Disabilty for a few years now. I have been thinking about trying to see if I can work at a local school in my community that I can walk to (I cant drive) for a few hours a day to socialize and lift my spirts. I know you are allowed to make up to $1500 a month if you are legally blind and collecting (I wouldnt be making anything close to that anyway) but I am scared that once I do try working a few hours a day, that they will take my benefits away from me. Does anyone do this already and has had no problems?
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