Please login to post a response.

• 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...

• Re: hello...
• Posted: 2008-02-26 08:23:08 By Jonathan R
• What "medicines and vitamins" is he giving you that is so expensive?
  
  As you know, there is no treatment for RP, so there's no need to empty your wallet on stuff that has no measurable effect.
  
  Are you buying these "treatments" from him, or someone else?

• Re: Re: hello...
• Posted: 2008-02-27 22:48:33 By shiela m
• ah...thanks for the reply..may I know where you from?
  no, im just taking afaxine (vit. A) 25000 IU. I,ve seen in the internet that taking at least 15000 IU of Vit. A may postpone blindness up to 10 years..
  thanks... god bless..

• Re: Re: Re: hello...
• Posted: 2008-02-29 08:09:34 By Ryan B
• Hi My name is Ryan. I am 23 years old. I Found out that I had RP a couple of years ago, so I can imagine what you're feeling right now. RP can be very difficult to deal with, but there is a lot of research that is going on and the future looks very promisimg. This is a good board in which you can find out all sorts of information. If you want to talk about anything in paticular, just let me know.

• Re: Re: Re: hello...
• Posted: 2008-02-29 21:36:21 By Jonathan R
• I'm from Tennessee, USA.
  
  There seem to be a lot of people who disagree with the effectiveness of the vitamin A treatment.
  
  Besides, vitamin A doesn't cost that much. I ordered more than a year's supply of 15,000 IUs pre day for about 30 dollars.
  http://www.carlsonlabs.com
  And, since I cut back to only taking about 30,000 IUs a week, my current supply will last me for a VERY long time.
  

• Re: Re: Re: Re: hello...
• Posted: 2008-03-03 23:22:49 By shiela m
• yeah right..but you know i am still hoping, besides i also have hyper mayopia and astigmatism so i still have to take it..
  I am from the third world country so medicines and other necessities were quite expensive unlike in your country but its okay..haha!! thats life..nice talking to you..
  i hope that if you heard some good news or new updates you will email me,,,tnx..

• Re: Re: Re: Re: hello...
• Posted: 2008-03-04 01:51:20 By shiela m
• ah okay...thank you so much..I did a right decision in registering on this site..i found a lot of things about RP. i meet new friends even if i dont see you guys, at least i found a person to talk to about things that only people with RP can understand..i am still in denial but still hoping for future research results, hoping for a positive one.
  i hope that we keep in touch even if we are miles away..god bless..