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Legally blind, albino type 1, diagnosed with retinitis pigmentosa. Recommendations?

I work with children as a teacher/aide librarian and yesterday I met a 16 year old young man. He is good-looking, articulate, musical and cheerful and legally blind and getting worse. I was a metre in front of him and his vision is so poor he could not even see my outline. He is an albino type 1 (I think) is under treatment from a specialist he very rarely sees so is not getting reports he needs so he can access help at high school. His mum said he is diagnosed with retinitis pigmentosa (I think that is what she said) but the specialist feels there is something more as his eyesight is worsening so quickly. From the gist of the conversation, mum and the doctors are just letting him go blind. I realise there are no magical cures but I feel sorry that this young man is condemned to this with no-one apparently doing anything to fight for him. Should I just stay out of it or would fighting to see another eye specialist be worth trying. Thanks Debbie
Asked On : Mon, 25 Mar 2013
Answers:  1 Views:  28
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Ophthalmologist 's  Response
retinitis pigmentosa is a genetic disease. The man wil be helped in his current vision by a low vision specialist who will suggest him special telescope (spect mountable) which wil increase his area and the extend to which he sees. There are certain special reading glasses too available in case he is having difficulty.
he should carry special long distance torch with a wider area with him in night.

low vision specialist are available in institute, you can look into net for the closest one.

RP disease patients are more prone to glaucoma, cataract- this could be the reason for decrease in vision.
do consult a retina specialist, theywould really be helpful in preventing complications.

RP can be progressive by itself until late adulthood , this needs to be monitored.

in nutshell, a regular checkup by superspecialist eil definately help in conserving his vision.

I support you for ur good cause. In case ofany queries be free to contact me any no. Of times
Answered: Sun, 30 Jun 2013
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