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Blind and Visually Impaired Community

Full History - 2017 - 08 - 01 - ID#6r1dpi
10
My sister-in-law has just been diagnosed with a degenerative eye disease she is 24 and will be completely blind in less than 2 years. Does anyone else have any experience with something like this? (self.Blind)
submitted by squirrelbee
What can I do to support her and my wife through this? My wife and sister-in-law are extremely close and I have no real clue how to react to this situation. I just want to be a supportive brother/husband but I'm at a bit of a loss here. (I'm not sure if this post follows the recommendation for screen readers or visual impairment accessibility I apologize in advance)
Namrakk 9 points 6y ago
I am going through something similar and can relate. In ways of support, depending on what type of person your SIL is she may need help navigating assistive technology, medical appointments, state services, and career planning, among others. In addition, she will need emotional support most of all. Understand this is a mental journey more than anything else. Make sure you are the one offering support and taking initiative rather than waiting for her to ask. If it looks like she's having trouble doing a task due to vision, ask her if you can help. Vision loss is a broad term, and different diseases cause vision loss to develop differently. She may become light sensitive, have reduced vision in her periphery, reduced acuity, or a combination of these symptoms. This is a big deal for her and it is sometimes easy to ignore or trivialize the problem since it is not easily visible to others. Do your research on what is causing her vision loss, and, if the cause is believed to be genetic, get genetic testing done at her earliest convenience (since testing will strengthen the diagnosis, can take a few months to complete, and is required for any sort of gene therapy clinical trials).

You all have a long road ahead of you. Take it one step at a time, and pm if I can help provide additional direction.

Edit: also know that by posting and taking steps to help her you have already done more than most others would
[deleted] 1 points 6y ago
[deleted]
mrg3rry 3 points 6y ago
What is the eye condition she has? When i was 21 I was diagnosed with Retinitis Pigmentosa and told "YOU WILL BE BLIND BY 30" I am now 42 with pretty good central vision in my right eye and about 6 dagreesa of peripheral vision.

I recommend contacting a local organization for oriantation and mobility and getting a white cane to beat of all the haters...
squirrelbee [OP] 1 points 6y ago
I don't know the exact name of the condition. Basically last year she was told she has multiple fluid buildups in the back of her eye the doctor said it was a condition that normally doesn't affect anyone younger than 55 and it generally causes total blindness within 25 years. She went back for her normal exam this year and the progression of the condition indicates that she will be completely blind in less than 2-3 years about 80% faster than the normal progression. Shes going to have a spot appear in her vision that will expand until it blocks her vision completely. Honestly the slow noticeable progression of it is what scares her the most shes told me multiple times that she'd rather wake up one morning completely blind and let that be the end of it. She doesn't have any noticeable symptoms of it yet but shes been referred to a few specialists and they have confirmed both the diagnosis and prognosis.

Edit: I'm pretty sure its either retinal vein occlusion or wet macular degeneration.
Not_Just_You -9 points 6y ago
>Does anyone else

Probably
DnBDeafNBlind 2 points 6y ago
Yep.
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