Okay as the parent of a legally blind person:
1- I have no idea and no one ever told me how often my kiddo should be seeing an ophthalmologist. She's been to a low vision clinic like once since she was diagnosed. Her eye condition is stable but like not once was it mentioned how often she should be seen.
2- the worst god damned thing that happened when she was diagnosed with her eye condition (ONH/SOD) was that the eye doctor *printed out the wikipedia article*. That felt so isolating, like this was so RARE that they didn't have a leaflet about it. I feel like so many blind kids have this problem- I see information for people with RP and ARMD who are losing vision later in life, but so many of the eye conditions that make kids blind are rare, but feeling that way sucked. And its not as rare or isolating as I thought based on that initial diagnosis. (she's 13 now and doing great)
3- I know your job is to take care of eye health and that's kind of where it ends, BUT if you wanted to be exceptional, give your newly diagnosed patients (or their parents if theyre little) resources. Tell them about facebook groups, local support groups, local organizations for the blind, blind youtubers, summer camps their kids can go to. I'm in a FB group about the condition my daughter has, and so many of the posts are "oh my god my kid just got diagnosed, what does the future look like for them?" because not having any idea what lies ahead is the worst. So many people dont even know a single blind/legally blind/VI person, and giving them someplace to look and connect and learn, and see examples of blind/VI people just living their lives can be so important to maintaining a good and realistic attitude toward things.

Oh man I am so glad that you're asking. I have many thoughts.

Your second question is easier, so I'll start with that--make sure you have alt text on any images you're showing a patient or an image description. This is just good web development practice actually since it helps people with slow internet connections too! Other than that and making sure your website ascribes to WCAG, you can't really do much unless you're also a web accessibility engineer or have more specialized knowledge...which is a very different career path. But please, be familiar with what a screen reader is and screen magnification. I have had at least one ophthalmologist ask how I use a computer.

Onto your first...please realize being blind doesn't make your patient an idiot. So many ophthalmologists think that I must be helpless because of my disease. I'm really not. On the flip side, dealing with this, especially at the beginning, sucks--when I first was diagnosed (I have npAIR) a simple "hey this sucks" would have gone a long way. It's definitely a delicate balance though; I've definitely had appointments since then where they've made way too much of a big deal about it (tbt to the time a dermatologist asked me if I could stand?? when I had clearly walked into her office??).

For a lot of rare things, the concept or idea of a cure is, quite frankly, unreachable in our lifetimes. I think for my disease it's mostly case reports. Helping patients cope with that and adapt to being a fully functional blind person instead of a dysfunctional sighted person can help a lot. Also, be upfront about how much some of the treatments SUCK. Especially if it's something like steroids where you can reasonably know they're going to suck. My current ophthalmologist is wonderful, but I was told most treatment side effects would be minimal...and then I ended up hospitalized. I get that things happen, but like, a heads up would have been nice.

In these times, realize COVID makes things really hard. I can't see well enough to socially distance or see well enough to know if someone is wearing a mask. Plus, blind people generally touch things more than others. Whatever can be done online should be. There isn't really a solution for this, but just something to be aware of.

Anyway, that's a lot from me...feel free to DM with any more specific questions or if I can help at all more.

Don't tell your RP patients they have "years."

I mentor people and I am currently seeing someone who was told she had RP in the middle of 2018, and within eight months she was down to light perception only. The ophthalmologist told her that it would probably take years to get really bad and that some people were still driving in their thirties. She was 14 and before she was 15 she was effectively completely blind other than being able to see the rough direction of a bright window in a dark room.

OK fine they did say "probably" but that is a really dangerous thing to say. I know that most of the time, it does take years, but if you say that and it is wrong, it can be absolutely horrible. Please warn your patients that it can, if rarely, happen very very fast, because it is almost always going to be better for them to know the truth.

Thanks a lot for the input, everyone!

Any incompetence or laziness in any aspect of your practice including incorrect language, spelling and grammar go a long way towards undermining our confidence in the specialists we see.

Keep professionalism in mind.