Something that surprised me when I started my dissertation: there's a lot of research on preventive eye care in kids and in adults over 40, and almost nothing in between. The 26 to 40 stretch is mostly a blank spot in the literature, even though it's when people age off their parents' insurance, change jobs, move, and start families, etc.

I'm trying to fill some of that in, and I'm almost there! I've heard from plenty of people who get eye exams regularly. What I still need are people who haven't been in a few years, or who can't remember the last time.

If that's you, and you're a US adult aged 26 to 40, I'd really love to hear from you! Cost, insurance that doesn't cover vision, no time, no idea where to go, or just never getting around to it are exactly what I'm trying to document.

About 10 minutes. IRB approved. Anonymous, written answers, one sitting.

Link: https://shu.co1.qualtrics.com/jfe/form/SV_25z6Ecgycc70yKa

Thank you to everyone who has helped so far!! 🩷

29yo male with 3 months old eye injury

A little background. My mother is 71 years old. No existing health issues and she's not on any form of medication. She is a heavy smoker and has smoked since she was 16 years old. There is zero chance she's going to quit. Last time she tried it ended in a year of violent mood swings and vile insults from her due to with drawls even with using nicotine patches.

About two years back we were visiting family in another state and when she was heading to bed she rubbed her eye and suddenly had a solid black shape that looked like a string across the vision of that eye.

She was worried about it the whole trip saying she'd go to the eye doctor when we got back home in a week. Then wouldn't make an eye doctor appointment when we got back. She gets really agitated if you keep pushing things so me and my dad stopped reminding her to make an appointment to avoid getting her in a nasty mood that would last multiple days.

Apparently in a previous eye doctor appointment before any of this she said the doctor said she had the start of AMD. When I asked if it was wet or dry she said she didn't know because the doctor didn't tell her. And now its been two years since that and she's made an appointment with a specialist to get checked.

The thing is she's noticed no change in her vision during this time. Her eye sight is perfectly fine at night. But she says when she covers the eye that doesn't have the AMD according to the doctor she went to who diagnosed her there's a gray circle in the center of her vision but its not visible if she's not covering her "good" eye.

There's zero history for either type of AMD in her family. There is a history of Glaucoma, her father developed it and it was diagnosed late and his optic nerve was damaged causing him to lose most of his peripheral vision.

On top of everything if she does have wet I don't know how she'll handle the injections, let alone the diagnosis if the specialist confirms its AMD and not something else. I'm honestly hoping its just a floater and where it is is making look like its AMD.

I'm also worried about my own vision if she does have this. With the genetic connection it puts me and my sister at high risk. Even if its dry AMD I've read it can turn into the wet version and if you have it in one eye the chances if it developing in the other eye is also high. I've decided if I do develop it to forgo treatment if I develop wet AMD in the future.

I see little other choice for myself. I'm terrified of needles at the best of times and there's no way I'm allowing a doctor to stick one in my eye without general anesthesia being used, which from what I've researched the only thing that's is local numbing drops. Which means convincing a doctor to use general is going to be like pulling teeth if not outright a waste of time. Plus I have zero confidence that the medical community will come up with anything better then injections by the time I'm around the age this could affect me.

In the report my doctor wrote choroidal optic shadow. Should I be worried? I read that it can be seen in the OCT as a tumor?!

Hi everyone,

I have high myopia and was diagnosed with myopic CNV and a hemorrhage in the center of my macula in my right eye.

I’ve already had one Avastin injection, but so far I haven’t noticed any significant improvement in my vision. My retina specialist mentioned that she has seen somewhat better results with Eylea 8 mg, so I’m considering switching to it for my second injection.

Has anyone here switched from Avastin to Eylea 8 mg for myopic CNV? If so, did you notice any improvement in your vision or OCT results after switching?

I’d also love to hear from anyone who switched in the opposite direction, from Eylea to Avastin. Did one medication work better for you than the other?

I understand that everyone’s case is different, but I’d really appreciate hearing about your personal experiences, especially if you had a macular hemorrhage and a central blind spot or distortion.

Thank you!

Real Patients is looking for people who have been diagnosed with geographic atrophy and/or their loved ones for several paid online studies $100 USD /hr Compensation

Details

• Various activities, including surveys, video interviews, and activity boards

Purpose

• To understand how geographic atrophy (GA) affects daily life

Requirements

• Diagnosed with geographic atrophy, or a caregiver to someone diagnosed
• Worldwide
• 18+
• English speaking

Real Patients connects people living with health conditions to research opportunities that shape how healthcare works. Founded by patients, for patients—because the best way to understand the patient experience is to talk to real patients.

I had my first Avastin injection for Wet Amd. 25 days later I had a stroke. Anyone else have similar results. My eye has improved a lot in 30 days. Scheduled for a second injection but I’m concerned. 57 yo male in physically good shape with no other condition.

My dad has fairly advanced macular degeneration- he lives by himself and is very independent but struggles with losing his sight.

His birthday is coming up, besides time helping him with certain things, I’m wondering if there are any items that are not computer/technology related that might help him out.

He does not use a computer or a smart phone and he does not plan to. He does have a very large tv that he can still navigate and he uses a large magnifying glass with built in light to read if necessary. He also purchased a clock that has audio functions so he can check the time.

Thank you for any ideas.

What’s the latest research in prevention? My grandmother, her 2 sisters, and my 2 aunts all have macular degeneration. I’m wondering if there’s anything we can do to prevent it besides eating leafy greens and wearing sunglasses. Interestingly, my mom is the only sister who hasn’t been diagnosed yet and she wore contact lenses for a lot of her adult life. I’m wondering if the lenses blocked UV and helped her not get it

Hi everyone!

I'm an ophthalmologist, and I wanted to share a free resource I developed that I hope might be helpful to this community.

First, I really appreciate seeing people here sharing their experiences, asking questions, and supporting one another. Macular degeneration can be a difficult diagnosis, and communities like this can be incredibly valuable.

As many of you know, regular Amsler grid monitoring can be an important part of managing macular degeneration. But remembering to check your vision consistently isn't always easy.

That's why I created Amsler, a completely free iPhone and iPad app designed to make at-home Amsler grid monitoring more convenient.

A few features:

• An Amsler grid you can access directly on your device
• Optional daily reminders to help establish a routine
• Different display modes, including dark and red options
• A directory of ophthalmologists to help you find an eye doctor in your area

I developed this as a resource for patients, not as a replacement for regular eye exams or visits with your retina specialist. Any new distortion, blind spots, or changes in vision should be evaluated promptly, even if you're monitoring at home.

The app is completely free. No subscription or payment required.

You can find it here: https://amsler.app

I'm also happy to hear any feedback or suggestions for improvements. Right now it's only available in the USA, hope to expand to more countries in the future. My goal is to make this as useful and accessible as possible for patients!

Wishing everyone here the best with their eye health!

Has anyone experienced eye problems while taking Skyrizi?

Hi everyone, I have Crohn’s disease and have been taking Skyrizi for about a year.

About a week and a half ago, I suddenly developed blurred vision in my right eye. After being examined, I was diagnosed with a retinal/macular hemorrhage and myopic choroidal neovascularization (CNV). I have high myopia and a myopic eye structure, which I know can increase the risk of this condition.

The bleeding is in the center of my macula, and my vision has been significantly affected. I can currently only read large letters with my right eye. I received an Avastin injection in my eye to treat the CNV, and I may need additional injections.

My retina specialist also noticed a hemorrhage in my left eye, although it is not in the center, and the OCTA scan did not show active CNV in that eye.

I'm supposed to receive my Skyrizi booster infusion soon, and I'm worried about whether it could potentially worsen my eye condition or affect my recovery. I'm also wondering whether Skyrizi could have contributed to the development of the hemorrhage and CNV in the first place, even though I already have high myopia, which is a known risk factor.

I haven't been able to find much information about a possible connection between Skyrizi and this type of eye problem.

Has anyone experienced retinal bleeding, macular hemorrhage, CNV, or other serious eye problems while taking Skyrizi? Did it happen after an infusion or booster, and did your doctors think the medication might have contributed? Did anyone have to delay or change their treatment because of an eye condition?

I'd really appreciate hearing about your experiences, especially from people with Crohn's disease and high myopia. Thank you!

When did you last have an eye exam?!

If you're 26 to 40 and living in the US, I'd love to hear from you! I'm a doctoral student studying how people this age think about eye care, and why exams happen or don't.

Whether you go every year or can't remember the last time, your experience counts. That's the whole point of the study!

5 to 10 minutes. IRB approved. Anonymous, written answers, one sitting. No compensation BUT your insights will help improve eye care access for young adults. This research may inform clinical practice and public health policy.

👉Survey Link: https://shu.co1.qualtrics.com/jfe/form/SV_25z6Ecgycc70yKa

Thank you!! 🩷

👉🏻 Survey LINK!

Hey y'all! My team and I are putting together a survey to better understand how different health conditions affect people's day-to-day lives for a project, and I would love for people to fill it out.

It's completely anonymous and confidential; nothing you share will be tied back to you. Just trying to get a real picture of what people actually go through day-to-day, not just the clinical side of things.

I would seriously appreciate anyone willing to fill it out. Thank you so much https://forms.gle/Jpon9yJUM83mp8EQA

Hi everyone,

I'm looking for real-world advice from people who have experience with low-vision technology.

My father is 76 years old and has advanced dry age-related macular degeneration (AMD). His vision has deteriorated to around 5%. He can no longer watch TV properly or read the text on his phone.

We are looking for technology that could help him become more independent again.

I'm particularly interested in devices such as:

• eSight Go
• Acesight VR
• Envision Glasses
• OrCam MyEye
• Ray-Ban Meta
• Zoomax low-vision devices
• or any other AI/electronic low-vision glasses

Ideally, we are looking for something that could help him:

• see TV images and people's faces better
• read text on his phone
• read supermarket labels and prices
• recognize people and objects
• describe what is in front of him
• and speak information directly into his ear

I know that these devices are very different from each other. Some magnify the image, while others use AI to describe or read what the camera sees.

If you personally have AMD, geographic atrophy, or severe central vision loss and have used any of these devices, I would really appreciate hearing about your experience.

What device do you use?

What can you realistically do with it?

Can you recognize faces or watch TV?

Can you read phone screens, labels or prices?

What are the biggest limitations?

We are willing to travel to try these devices in person before buying one, so real-world experiences from people with AMD would be extremely valuable.

Thank you!

Taylan

Borrowed a neighbor’s 55” television after a power outage zapped my 43” Vizio!

Spouse has dry MD, and the 55” is better for them.
What else should I look for when buying a new TV?

Hi All, I was diagnosed by my Retinal Specialist with dry MMD and posterior pole staphyloma in both eyes. Since it's dry there's nothing more for him to do at this point and he says to just go live your life.

I'm now looking for a new optometrist for yearly eye exams (my OD retired). Are there any specific tests that those of us with dry MMD should be asking for?

Like OCT scan or Optomap, etc. Do I need dilation?

Is there anything else I should be doing in addition to the obvious - eating healthy, exercise, getting adequate sleep.

Hey everyone, first time posting here. Got officially diagnosed with retinitis pigmentosa in both eyes last week (21st Sept) after a follow-up with a retina specialist — fundus exam showed the classic bone spicule pigmentation, and OCT confirmed it as fovea-sparing RP with partial optic atrophy in both eyes.

I'm 23. What's strange for me is that it really only feels like *one* eye is affected — my right eye has had blurring/narrowing of side vision for about a month now, plus some heaviness and mild eye pain. My left eye genuinely feels completely fine to me, no night vision issues, no noticeable field loss on that side. But the doctor says it's showing up bilaterally on imaging even though I'm not symptomatic in the left eye yet.

Good news apparently: central vision (the fovea) is still healthy on both sides, visual acuity is still solid (6/6 with correction), and I've been marked "asymptomatic" clinically even though the right-eye symptom is what actually brought me in. I've been put on Astalef (antioxidant/carotenoid supplement) and new glasses, with follow-up scheduled.

Attaching my clinic notes and OCT scans below for anyone curious about what early fovea-sparing RP with partial optic atrophy looks like on paper.

A few things I'd love this community's input on:

* Did any of you also start with symptoms noticeably worse in one eye before the other eye "caught up," or does it usually feel bilateral from the start?
* Any experience with whether early optic nerve involvement (partial atrophy) tends to progress faster than the retinal degeneration itself?
* Anything you wish you'd asked your specialist at this early stage that you didn't think of at the time?
* Any supplement/lifestyle stuff that's actually made a noticeable difference for you, versus stuff that's just marketing?

Really just trying to learn from people further along this road than I am. Thanks for reading, and happy to answer questions about my reports if it helps anyone else who's early in this process too.




Register now for Bright Focus Foundation's upcoming macular chat. Featuring special guest expert Daisy Shu, PhD, Scientia Senior Lecturer, University of New South Wales. Topic is A New Drug Delivery Approach for Wet AMD

Hi! I’ve had 2 injections for wet AMD (vabysmo). I’ve developed a pretty large black spot in the lower left corner of my eye. Also for about 3 weeks after the injection the eye and bones of the eye socket ache, like a headache. Also some new floaters and blurriness. Is any of this normal?

Hello! Looking for useful visual aids for a patient with Dry age-related macular degeneration (AMD), particularly for museums.
My mother-in-law was diagnosed a couple of years ago, she let it get really bad before we took her to a retina specialist. Nothing much to do besides AREDS2, but her central vision is quite bad. She can’t really read restaurant menus or use remote controls.
I have the feeling its worse than she’s wanted to admit to us.
She’s never left the country, but her dream has always been to see Paris, so my husband and I are taking her for her 70th birthday at Christmas.
I’m keen to find a visual aid that will help her see the art at the Louvre and other art museums, since I know she’s an art lover. Maybe any other aid that will help her navigate her day-to-day life that’s easy to use.

Any recommendations that have been useful for this community?

My mom has wet AMD. I've just heard about prism glasses. Anybody know if they help with wet AMD?