alishainc

27" iMac, zoomed it. I see this.

Stargardt's is a recessive gene disorder that has caused the central part of my eye called the retina t deteriorate to the point of legal blindness. It affect younger people which is why it's categorized as Juvenile Macular Degeneration. Doctors can not tell me how much worse it'll get but it may plateau and stabilize. Because my retina has deteriorated, I can't see regular print. I use a 27" iMac that I zoom into in order to see what I'm typing. I can't recognize faces or see facial expression more than four steps ahead of me. Bright days burn my eyes because of my new sensitivity to light. It requires a lot of adaptation and positivity as it can be extremely frustrating at times but I am grateful that I have my peripheral.

Luckily, I'll never be completely 'black out' blind. No one seems to be able to predict how much worse it'll get though. My central vision is gone to the point past legal blindness. I still have great peripheral range

I don't think I'm prepared, I got really scared about a year ago when it drastically deteriorated.

My dream job has been to be a YouTuber. I went to school for Nutrition but I realized it's not for me. I love the ability to communicate with people through that platform. It makes filming really hard because I can't see the camera clearly, so I never know if I'm in focus until post filming. Editing is difficult because I have to zoom in several times a minute to add effects etc

It has limited me from quitting unfavourable jobs and simply getting new work because employers are apprehesive of someone who can't see well.

The goal is to be self employed. Youtube may be it or it may be a stepping stone

I used to be so worried about being judged, chastised and mocked for this. I kept it secret from the first three or so years. Pity was a worry of mine too, I finally shared my story on YouTube last October and the response was far from any of those fears. People have been understanding and curious and supportive.

I miss reading!!! I miss curling up with a good book and getting lost in the pages. I miss crossing the street confidently. It's funny to think I would be scared to cross at 27y.o. but I can't see the crosswalk across the street so I have to look behind me. Sometimes by the time I look behind me at the walk sign, I've missed my chance to cross. I miss shopping without having to ask for help with price tags and labels. Most of all, I miss being able to make eye contact with someone. I can't see faces and expressions unless someone is sitting beside me.

Yes, I have a boyfriend. He's the one who told me to write on reddit =)

My favourite colour is purple

The third doctor out of the first 7 I saw in one year lol. I noticed I couldn't see quite as well when I was 19, they threw around the them 'Stargardt's' when I was 20 but a blood test confirmed it at the end of my 20th year

Few people in my family have visual issues and at most glaucoma and cataracts in older age. No one had heard of it before me

Yes I have one I see annually, she isn't very good. I've seen another doctor who isn't my opthomologist but she has been a mentor on this journey providing suggesting, redoing tests that my optometrist lazily has done and being positive. It really helps