Her photophobia will probably get worse as things progress (mine has). If she still wears glasses I suggest Cocoons. They're fit over sunglasses that wrap around the sides of your head. I have a pair and wear them whenever I go outside. I even wear mine when working on the computer (they're polarized and filter out blue light as well). They have helped with eye pain and headaches tremendously, I do get weird looks but that usually happens if I wear them in a bright store.


I've lost all visual acuity in my right eye but am still 20/20 in my left with glasses at 30, my sister(31) also has it but her vision in her left eye is slightly worse than mine, so there's hope.

I think the best thing you can do is to just be there as needs change. It's also a good idea to look into all the accessibility tools available. I've been living with Stargardts for slightly over 30+ years now & I'm always thankful for all the technology.

FWIW, as someone pretty active in the Stargardt’s Community, I have *never* seen a case of someone losing all of their vision. That’s not to say it won’t be hard, but a lot of people plateau after only a little bit, and most keep at least some of their peripheral vision.

The biggest thing is just to be there — there’s a lot of unknowns, so it’s hard to have one single way of responding to it. If she uses Facebook at all, you may point her towards some for the Stargardt’s Facebook Groups — there are some pretty big groups that are great.

From what I’ve been told about stargardts is it only effects your centre vision…I also have stargardts myself for about 8yrs now…started aged 32. For me one of the worst thing is feeling I’ve lost my independence as I can’t drive anymore so have to rely on others to help if needs be. I can’t see faces unless about a metre away so find it hard to recognise people etc

I would say the best thing you can do is be there for her as you are doing already, be prepared for bad days where she may get frustrated at something that she was able to do previously.

There are devices out that can help including apps on phones that will describe people’s features, read writing, zoom etc

There will be bad days BUT there WILL also be very good days. Take each day as it comes and continues being a great supportive friend

As someone who has Stargardt’s, I just want to say that you are such an incredible friend for reaching out to help her. She is so lucky to have you!