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!

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

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!

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

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

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?

I’m seeing a retina specialist on November 11.
Back in 2020 I had a normal eye test that showed nothing wrong with my eyes.
In January 2022 I fell on the ice and broke a bone in my face. They sent me to different doctors to make sure I’m okay. When I went to eye doctor he did quick exam and saw a scattering of “inflammation” in the back of my left eye.
A year later I went to an eye doctor in New Hampshire. Said he saw drusen on the back of my left eye. But not in the macula. Nothing in the right.
I went back 6 months later and saw no change.
A few weeks ago I went to eye doctor in CT who saw drusen in left eye and drusen on my right macula.
Now I’m going to see retina specialist here in CT.
Anyone on here get diagnosed with drusen young? How has it turned out for you?
I’m terrified. I need to hear what your outcomes were. I have two little kids and I want to work as long as possible to give them a good life.
Thank you

Hi, I recently have been told I have drusen on my macula.
I went to the eye doctor because of infrequent blurry smudge in left eye.
Did anyone that has confirmed MD in this Reddit thread have that symptom?
Not constant blurry smudge. It comes and goes.
Did any of you in the beginning have a blurry smudge in your center vision that was infrequent and not all the time?
How long did this symptom last before things got worse?

Update:
Completed 2 of 3 treatments this week.
Pleasantly surprised that the waiting room was fairly empty.
True to what we were told, the small tabletop light machine delivered the 5 minute treatment.
Easy-peasy.

Post-treatment: some light sensitivity; depth perception was affected for about 1/2hr.
—————————————
Spouse is starting the new Light therapy for Dry MD tomorrow; 9 weeks @ 3x a week, 27 treatments.
We’re a little apprehensive; has anyone else tried this?
What should we expect?

Hello! I am 32 and have MMD. I have a 3 year old so of course I’m looking for any treatment I can. I’ve done injections but stumbled on some medical journals about the effectiveness of certain herbs in treating CNV. The closest combination to the herbs I can find is this. Anyone ever tried it??

Hey everyone, I’m posting here because I’m honestly a bit confused and worried and would really appreciate hearing from people who actually live with Stargardt.

My girlfriend is 26 now and was diagnosed with macular dystrophy when she was around 15–16. She’s currently working as a physiotherapist. We recently saw a retina specialist, and based on her history and current examination, the doctor thinks it’s most likely Stargardt.

The thing is, her central vision is still there and has been pretty stable for years. The doctor also feels that it may stay like this.

We asked about genetic testing, but were told that finding the exact mutation can be difficult and the testing can be quite expensive, so it may not be worth pursuing right now.

I’ve read that Stargardt can cause gradual loss of central vision, so I’m struggling to understand what we should realistically expect long term.

A few things are especially worrying me:

Was your vision stable for many years and then changed later?

If you have Stargardt, are you still able to work normally? Especially in jobs that require practical/physical work?

Since she’s a physiotherapist, could she realistically continue working if her vision gets worse? What kind of assistance/adaptations have helped you at work or with everyday tasks?

Did anyone here get genetic testing? Was it useful?
And regarding having children — if one partner has Stargardt, what is the actual risk to the children?

Did anyone go through genetic counselling/planning before having kids?

I know everyone’s progression can be very different, and I’m not looking for a diagnosis here. I’d just really like to hear from people who have actually lived with Stargardt and how life/work/family planning has worked out for them.

Thanks in advance 🙏

My mother took for a year.initially there was improvement now its come to a halt..so dr advised her there's no use to take..is this how it's supposed to be..any alternative. Shes making more typing errors now..

My 72yo mother has snd she's taken injections .it helped to some extent but Dr's are thinking of stopping it as there's no improvement (she took around 6 injections I think).

Shes not able to type properly.she doesn't express her difficulties but am sure it's hindering her daily activities. Any supplements or anything that can help.we stay in india btw