Some stories about my vision loss from LHON (Leber hereditary optic neuropathy). Almost two years in, I am still adjusting. It is difficult, but I am getting better at coping.
I'm LHON affected in 2004. I see people describe and track them the same way lol I think of it as putting different types of dolls in a dollhouse lol classifying different types of people by their style of clothing the way they hold their hands stand emote speak hairstyle if we can tell they have hair lol and try to stick new people I meet in a specific section and floor of the house to help remember who they are... I was in the gene therapy trial in 2011-2013 at Bascom Palmer but I had to leave the trial because I was also diagnosed with multiple sclerosis. I took 16,000 vitamins over 3 years while I was in the trial and got about 30% of my vision back and I was hoping that plus the shot will give me even more improvement and I get my damn driver's license back lol I think it is amazing that you have had improvement it sounds like from you talking about your eye test being a line better on the eye chart is about the same as I got from taking all the pills Idebenone 1,500 mg/day and I know how absolutely amazingly life-changing in a good way a great way that amount of vision coming back can be but and it is a big BUT it also makes things way more irritating lol I used to not be able to see this now I can see it so much better but that's not enough I still can't see it perfectly I want to break it lol Keep your head up and keep fighting girl!
You should have a look at the company called GenSight, they passed phase 3 trials for LHON, 25 participants showed a significant vision increase, 4 showed an increase. Hoping that with medical advances your LHON isn't life long and is treatable soon
