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 Retinitis Pigmentosa, Genetic Eye Disease

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TSdarrenwks
post Mar 9 2018, 04:57 PM, updated 8y ago

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Anyone heard about it or family/friend has this disease? Come share your story

I dont have it but my dad does, now 56yo and his vision is getting worse, i think he can only see less than 10 percent now? he can hardly see at night and also day, it takes very long for him to adjust to the light setting whenever he's entering dark/bright area. If worse comes to worst he can eventually lose all vision and go blind.

He doesn't drive anymore, whenever we go out we need to hold him else he would bang into other ppl/things. Well he's legally blind and eye clinic/hospital said there is no cure for this inherited eye disease yet, asking us to help him register OKU/blind society. i know i carry the genes but i'm lucky because i didn't kena as my eye sight is very good, still i think i'm gonna need to check it soon.

Retinitis pigmentosa (RP) is a group of rare, genetic disorders that involve a breakdown and loss of cells in the retina—which is the light sensitive tissue that lines the back of the eye. Common symptoms include difficulty seeing at night and a loss of side (peripheral) vision.

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After some research i think there are some hopes for people who have this disease, scientists are testing this "Luxturna" to help cure inherited eye disease including Leber’s Congenital Amaurosis (LCA) and retinitis pigmentosa 20.:

QUOTE
"The FDA will formally meet in January 2018 to officially decide if Luxturna (voretigene neparvovec) will be approved. This may be the first gene therapy treatment used for eye disease.

Luxturna is manufactured by Spark Therapeutics and is intended to be used to treat patients with Leber’s Congenital Amaurosis (LCA) and retinitis pigmentosa 20."

"Luxturna, a one time treatment, will insert “normal” DNA into the retinal cells. Luxturna will be injected into the eye to allow direct exposure to the retina.

The normal DNA will contain intact and functioning copies of RPE65 which will produce a normal protein.

Production of the normal protein should restore, or improve, the retina’s “vision cycle” and lead to improved vision."


from: http://www.retinaeyedoctor.com/2017/11/gen...ents-blindness/

jialat
post Mar 11 2018, 03:12 PM

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you are still young now, RP wont strike so early age.

You need to protect your eyes especially the retina cells from all sort of harmful rays as early as possible. Lutina lens can help prevent damages to retina. PM me if you have no idea where to get them.

 

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