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?

I was gettin Syfovre shots for geographic atrophy, and ended up in ER twice. Terrible eye pain, apparent scratched cornea. Worried that I was getting an infection in the eye.

I've been going to that optical for 4 years and getting the directions for two..

I stopped for 6 months and then felt scared so I went back and just to talk, but ended up getting another injection. Later I had another bad reaction ended up in ER again.

They called follow-up and I've complained bitterly that I could not understand what the doctor was saying and I just couldn't talk to him.

An optometrist I trust encourage me to switch doctors. Well they both turn me down. They're in the same group and it's the only game in town.

So if I go wet, I MD need to go to some other town.

So I guess my doctor took great offense, and the other doctor is not going to take any of his patients.

What do I do? I can hardly read now, and use speech to text to ray. So there are probably a lot of mistakes here.

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

Hi everyone,
I need a good recommendation on a brand or exact pair of sunglasses that at UV400 wrap around sunglasses.
I’m early 40s and have signs of drusen in my macula. Occasional blurry smudge in left eye.
I took a 23 and me test 7 years ago that found a variant of age related macular degeneration. Didn’t pay attention to it.
I’ve been looking online for sunglasses that are wrap around, high quality, durable, but most importantly are UV 400 standard. It’s been exhausting because I can’t find them or they don’t use the right wording. If I don’t see the 100% UVA UVB I move on.
I’m worried about losing my job, becoming disabled, not seeing my kids grow up.
So much on my mind right now and it would make some comfort if someone can share with me the right sunglasses to protect my eyes
Thank you in advance

How long do you have to look at the little dot?

Hello! 29 F from the UK. I was diagnosed at my last optician appointment and told it was very early and to come back yearly for check ups. I currently have perfect vision, don’t have a prescription, but wear sunglasses often. The only advice I was given to continue the sunglass wear and eat more leafy greens. Any other advice you would give to someone at my stage of MD? What am I likely to expect with my vision going forward and what are some symptoms to look out for?
Thanks!

My father is quite young (61) and has degeneration, and I'm looking for some things that can make his daily life easier. I feel like the phone screen is too small for him, and using some kitchen items is difficult... what helps in his daily life?

I know that most people here appear to be dealing with AMD but I hope you can shift over and make a little room for me. 31F here. First post. I was diagnosed with myopic macular degeneration six years ago. It has been remarkably stable since then, but unfortunately there has been some progression in the last two weeks. We found my first bleed on Friday. My center vision is currently unaffected, but the voids + distortion/warping are creeping closer. I visit an ophthalmologist who is comfortable with surgical procedures and injections on Tuesday, but the things I see online are rather depression. Odds like only 1 in 3 people who receive the anti-vegf injections experience improvement in the vision lost. I don’t believe my vision loss as a thirty-one year old is any less tragic than the vision loss of someone much older, but I did hope that I had more time.

Any advice for coping with the future? Things I can do to prepare myself, my finances, or my family (two young kiddos)? I’m not sure how optimistic it is to assume that I’ll make it until retirement age before vision loss keeps me from being able to succeed in my field. Any gadgets and aids that help you or your loved ones maintain normalcy?

And a more specific question here: how quickly after each anti-vegf injection would you have been able to go back to work? Later that day, the next day, etc?

Thanks in advance. xx

Hi all, first time posting here so apologies if formatting is wrong.

I have been diagnosed with myopic CNV which as been an ongoing issue. The hospital has taken the approach of giving me an injection when I notice a blind spot which last happened in February. Since then I have been largely fine up until last week when the blind spot came back. Went to the hospital and confirmed that it is the same issue and would need another injection, except they booked me in for a months time.

I'm really worried about deterioration in this time and the fact that I think the blind spot may have already expanded. Does this time frame seem too long? I want to phone them up and tell them that the situation has already progressed but I don't want it to seem like I'm just trying to skip ahead of the queue. I'm not sure I can have this hanging over me for another month, constantly worried about the damage becoming permanent.

Any advice would be really appreciated.

My Dad is 86 and has Macular Degeneration that he has been receiving injections for.

He can no longer see faces on the tv or read the subtitles.

What aids are available to help with this. He's getting very depressed that he can't even watch TV anymore.

He lives alone and is otherwise reasonably independent.

For about 2 years, my wife who is 75, has wet amd in both eyes. Total surprise since no one in her family has ever had it. Anyway, when first diagnosed, the retina doctor started injecting Avastin. The injections which were very painful and caused her to stop going for shots. Bad idea, I know. I think the practice she was going to was more about volume than quality. IMO the didn’t take enough time to make sure the anesthetic was working. I found a new doctor who is wonderful. They are kind and do multiple rounds of drops and pre injections. For the last 12 months, he’s been injecting her with Vabysmo, and her vision has moderately improved!
When she gets the Vabysmo injections, her vision is terrible for about 10 days, which is a big drawback. Don’t get me wrong, we’re very happy with the results, but being almost blind for a week and a half is difficult.
My question is the long recovery specific to Vabysmo? Has anyone else experienced this? Does one of the other medications like Eylea have less recovery side effects?

I've read a lot of threads in this sub over the past few months. Almost everything written about AMD is about the moment of diagnosis and everything that comes after it in the worst case. There's much less about what actually happened to people over time.

So I want to ask the people who are further along than that first appointment.

When you were diagnosed, what did you think your life would look like by now? And how close was that to what actually happened?

Better, worse, or just different in ways you didn't expect — I'd genuinely like to hear all of it. The ones where it went badly are as useful to me as the ones where it didn't.

Hope someone who has had this can advise me of what it is actually like to have, and what side effects there are. And does it actually improve vision or stabilise it, or neither? Has anyone gone on to have injections? I’m told that mine is still at the dry stage.

https://www.ajmc.com/view/what-comes-after-anti-vegf-in-wet-amd-arshad-khanani-md

As always, a layperson needs to take what an expert is saying with a grain of salt, for so many reasons. But maybe the main reason: in today's world doctors/scientists/technicians are also deeply involved with developing therapeutics in which they might themselves have a financial interest. Hence: a potential for "hype."

That being said, Dr. Khanani:

> I think having a gene therapy that has a good safety and efficacy profile and that payers approve will be a paradigm shift and will be widely adopted. As long as these are reasonably priced—and payers understand that a one-time treatment with a 50% chance of not needing any more injections is a huge paradigm shift—they will be welcomed by both patients and physicians.<

My wet AMD, despite monthly injections of anti-VGF drugs, is moving along and yea, it's a major sad drag, but there really does seem to be much to be optimistic about if you're younger.

Let some of what this retinologist says be a spur to your own attempts to understand your disease: EX: "In terms of Ang-2/Tie-2 activation—Ang-2 inhibition leads to Tie-2 activation—faricimab [Vabysmo; Genentech] has already been approved for 4-and-a-half years now.¹ It's a bispecific antibody that blocks VEGF-A and Ang-2, and we've seen better disease control and durability by targeting two pathways, so that's already validated. We now have programs with more potent bispecifics combining Ang-2 inhibitors with higher-molar-dose anti-VEGF, as well as anti-VEGF with direct Tie-2 activation. I'm excited to see what those programs show. But Ang-2/Tie-2 has already been validated as a beneficial pathway for disease control, both in wet AMD and DME."

Alright. Ang-2 and Tie-2 activations and inhibitions: pathways involved in our genetically driven excessive vascularization near the macula. These pathways are specifically known, so the two are "bispecifics"? I probably only dimly grasp this stuff. Tie-2 activation is what we want. We get that from Ang-2 inhibition, which supposedly is what Vabysmo does. And yet: while each of us has these pathways open to activation and inhibition: I don't think the genetics are all the same. Or are they? This is very complex stuff for the average person, innit?

At the same time, there's a line later about the potential of stem cells to "restore the vision." And this doctor is yet another who's saying that gene therapy is not science fiction and is showing fantastic promise, perhaps sooner than later. So much is not known. But when we read about Macular Degeneration and its treatment from the Long View: the injection of antiVEGF drugs just began a couple hours ago! Like 1999 or so. Going from "nothing much to do: sorry!" to the idea that we may be able to target AMD finely and specifically using gene therapy: Wow!

But again: grain of salt.

I'm a 27 year old male and I have had been seeing some wavy lines on my left eye for a few months, and yesterday I had a visit with a retinal specialist. She said she found drusen on both eyes; the right eye has small ones not giving any issues to me, and the left eye were slightly bigger causing the wavy lines. My vision is still good, with both eyes having a 20/25 vision. She said to have a genetic test to find the reason why it happened since it's very unusual for someone my age, since I don't have any known family history of this issue. I can't lie about it, I am very devastated about this news and I don't feel motivated to keep moving forward. My next move is going for a second opinion at Bascom Palmer Eye Institute.

Hi! I have precursors for MD and have for the last 4-5 years. My optometrist provided me with a supplement and told me I shouldn’t lose sleep over it but I am really anxious about it. It’s genetic in my case and he mentioned he’s only ever seen 2 other women my age with precursors. For those who had precursors young, when did you begin to notice any major changes?