Question - Retinitis pigmentosa

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Rp and life

Asked 8 years ago Yelda 41

how can you live with this disese?

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This is a rather vague question, so I can only offer a vague response. Put simply, because not living is not an option. It is hard, but once the shock from the initial diagnosis wears off, most of us are eager to get back to our lives and the things we love. While there are things that are difficult, there is very little that we actually cannot do. 

Answered 8 years ago Sara 90
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The only alternative to living with RP, is dying. RP is a lot of things but it's not deadly, unless you have RP and are driving a vehicle, playing with weapons, or have taken up juggling chainsaws. Other than that I truly believe all of us living entities are in existence to enjoy life, explore, learn and love. If your not having fun you should quickly stop what your doing that's not fun and figure out a way to exist that is fun. 

As Capt. Jack Sparrow once said " The problem is not the problem. The problem is your attitude about the problem."

There is a whole candy store full of diseases we can get and RP is not the worse of them. It won't kill you (unless well... see above), it doesn't really hurt ( there is some eye strain involved),  Yeah the whole going blind stuff really sucks coconuts off the palm trees, but you learn to adapt and live with it. Not cause your some sorta hero or have superpowers of overcoming obstacles but cause that's just how life is, it goes on. I know we all go though the scary parts and the feelings of isolation but there are things you can do. League of the blind can give you mobility classes, even has blind bowling leagues and social gatherings. You can get together with others who have RP and bitch about it, cry about it and  joke about it, the companionship helps.

One of the best things to do when you feel helpless is to help others. volunteer and discover how much you can do for other people and you will also discover how much you can do. Spit in the eye of RP, test your limits then never accept them as limits. Good life and good luck to you Yelda :D

Answered 8 years ago X. Pluto Brand 10
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The problem is not the problem. The problem is your attitude about the problem."  yesss that is really true.i agree with you Pluto Brand.  And i know the person is a social entity. so We all people live together. İ tell people my problem, i want them to help me. But people forget my problem about rp or usher syndrome after a moment! So i feel ashamed. And i cant hear the people. But my outside appereance is very good! so that is why i suffer. İ cant hear enough, i cant see enough. :( so i cant do anything with people. Or my relationships are limited. But i admit to be happy to meet you llike me.  Your advices are very important for me. Thanks you very much for advices and supports. 

Answered 8 years ago Yelda 41
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