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Coping With Retinitis Pigmentosa

This section is a place to share stories about Coping With Retinitis Pigmentosa.

Below are entries of those who have already shared their stories. We hope that you find their experiences helpful to your own situation.

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Living with Blindness
by: Margaret on Mon, Feb 25 2008
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My husband has R.P. and was diagnosed when he was in his early 30’s. We were ignorant of this disease and after trying to find a connection in the family came up with nothing. We had a visit from a gentleman suffering RP and he told us of his coping skills and that he was still able to read a paper albeit he held it right up to his face.

The years passed with the Bill’s loss of sight with us hoping that he would always be able to see things however slight. Our luck ran out when he was around 60 and at that time he sight was gone completely - nothing only black or grey fuzz - no shapes or sizes - what a shock. However, for thos of you who are unfortunate to have this disease I would like to say that regardless of his disability, BIll can still continue to do things like folding clothes, washing dishes, even takes things apart and with great care can reassemble them i.e. the humidifier on the furnace. We even manage to go on the occasional cruise where he likes to sit on deck and listen to his book.

I felt the need to share this with people, I am so proud of my husband and the way he has learned to cope. Thank you for letting me tell his story - he has two grandchildren whom he has never seen but when the third one came along the nurse at the hospital sat him down and put the baby in his arms then took his hand and gently ran it over the little one’s face and in his way, he saw her. God bless those of you without sight.


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  1. Sat, Feb 07 2009
    I would just like to thank you for sharing. I have RP, I am 27 and have know all my life. One of the many things I worry about is whether I will be ...Read

February 2008

  • Living with Blindness - by Margaret - (Mon, Feb 25 2008)
    My husband has R.P. and was diagnosed when he was in his early 30’s. We were ignorant of this disease and after trying to find a connection in the family came up with nothing. We had a visit from a gentleman suffering RP and he told us of his coping skills and that he was still able to read a paper albeit he held it right up to his face. [more..]
  • I have Retinitis Pigmentosa - by Zurai - (Fri, Feb 01 2008)
    I have just been diagnosed with having retinitis pigmentosa, I am 35 years old ang I have two children and the vonis it a very big shock to me and my family. [more..]

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