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Blind and Visually Impaired Community

Full History - 2021 - 06 - 07 - ID#nutpj1
6
Paraneoplastic Retinopathy (self.Blind)
submitted by Viagra_Was_My_Idea
My mom was diagnosed with this shortly after chemo and surgery for stage 4 ovarian cancer. While recovering her eyesight slowly started deteriorating (she went in and got the diagnosis) and was put on rotuxin. She can still slightly see on good days. We are trying to get used to announcing ourselves when we enter or leave a room. We have got rules about leaving things on the ground and trying to get the dogs to lay in safe places.We found out direct sunlight is terrible for her as she loses almost all sight the following day. She wears polarized glasses and can see things quite well if the object is put up to the sky, as to see the outline more clearly. Using a flashlight she can see a blurry object in her way while walking. The issue is, she keeps getting hope that her vision will stop getting worse and for a day or two it does. Then there is a bad day and things get worse.

Just putting this out there to maybe get any advice that I could give my mom, if anyone else has gone through this. Or even provide a good idea to someone else in a similar in position.
BlueIr1ses 2 points 2y ago
Does your mom have CAR (Cancer Associated Retinopathy)? I have Autoimmune Retinopathy (AIR) which is related. You will find a lot of good advice about adjusting to sight loss here.

There used to be a CAR group on fb, but I can't seem to find it now. Here is a link to the AIR group, which does have some folks with CAR: $1

Sending good thoughts to your mom!
Viagra_Was_My_Idea [OP] 1 points 2y ago
Sorry for the late reply! Thanks for the information, it's greatly appreciated. Yes it's Cancer Associated Retinopathy. Seems to be pretty rare as there isn't a lot of support for it on the internet.
ZombieLavos 1 points 2y ago
My dad got the cancer one and we can't find anything and no doctors know how to treat it. ><
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