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Big hugs, Marie. xx

How old were you when you were diagnosed ?

So interesting. I had such a similar experience during my "diagnosis", which was about 18 years ago. I went to Moorfields Eye Hospital in London with a dark spot in the middle of my eye; they told me it was vessel growth and that I'd need an injection and then sent me home. A couple of hours later, the vessel burst, and my vision filled with blood, so I rushed back to the hospital, and they just said, oh yes, that's just the vessel bursting, like that was normal and I should have known to expect it! Anyway, I had the injection and my sight improved, but I still have some distortion. But they never mentioned MMD, and like you, I discovered it through my own research. I have since had a retinal detachment and another liquid leakage, which I needed injections to clear up. Still, no one I see at the hospital (I now live in Sweden) mentions MMD. I recently also had quite a dramatic/sudden decrease in vision in my right eye, I went to the hospital, and they could not see anything happening in the retina and just said, "oh, it's probably just your eyes deteriorating, ok bye". No support or next steps. I just burst into tears, and the doctors looked very shocked that I should be so upset! It seems to be such an under-researched diagnosis and very undefined. What I find the hardest is the unknown. When will the next thing happen to decrease my eyesight even more? I try to really live in the now and enjoy my life to the fullest, but still, my sight is always a worry. Thanks for your videos. reassuring to know you are not the only one.

have you been certified as partially sighted?

I never thought I was going to find on RUclips someone with myopia as high as mine, I have 21+ diopters on both eyes, and by the look of your glasses I’m guessing you might have a similar prescription, I’m in the midst of my diagnosis, they just ruled out this neovascular membrane thing, so it’s not that, it they’re saying I might have Stafiloma, I’m still waiting to get some more tests done.

There is Electro stimulation Vision restoration in Germany. Please look it up. There are two clinics that offer this kind of treatment. One of them is. Fedorov vision restoration.

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❤❤❤❤❤❤ thank you for this video. I was diagnosed kind of late because I did not really take the time but now that I’m 47 I am aware of it you know and things started to progress when I was 17 years old and no one understood what was wrong with my eyes but it’s really hard to explain to people, especially when you’re going to the eye doctor right now I’m trying to get my learners permit but I don’t think I will be able to but I just wanted to tell you thank you so much because I’m definitely watching and learning from you

You are already doing an amazing and brave work. Enjoyong life to the fullest with what you have been given 🫂

You ever considered icl?

"Wow, your video is incredibly informative!"

My first bleed was small, and I had been warned that bleeds were possible. I handled it really well. It was my worse eye anyway, so I took it in stride. 3 weeks later I got a bleed in the other eye, smack in the center. I lost my shit. I was sobbing, and kind of panicking. Everyone had said it would only be one eye at first. I was wholly unprepared for the second one. I went from cool, calm and collected to absolutely stricken. I didn't come out of that funk for days. That was the first time I really felt that terror that comes with not knowing how long I had left as a sighted person.

I use my phone as a magnifier for distance or menus at restaurants where its hung up behind the register and other things like that. It ends up being shaky, but it does make it easier. I can take off my glasses and put it 3 inches from my face if I need to to remove the extra distortion glasses can cause, or use the clear ring of vision I have between my central and peripheral vision.

I had been going to ophthalmologists for years because I was losing peripheral and night vision and on plaquenil, which requires regular field of vision testing. Apparently I have severe lattice degeneration, hence the kiss of peripheral vision. When I was 30 I asked the Doctor why my vision kept getting worse when most people seem to stabilize, and he told me "its the pathological myopia." I hadn't ever even heard the term before and he acted as though someone obviously would have told me already, but no one had. I knew it was bad though when he referred me to a retina specialist. All I could think was, why didn't anyone ever tell me? Then at my last appointment I saw a new doctor at a new facility, because no one seemed to want to answer questions the one. No one seemed to really know anything. Well the new facilities upload health records to an online portal. That's how I found I'm developing cataracts. I knew it was a risk of the injections, but no one has actually told me about it yet. He told me my dry degeneration is getting bad, but never even mentioned the beginning of cataracts.

I know now I am not alone ( unfortunately) -- don't wish on anyone. Difficult for condition to be taken seriously when you can "see". I have had a similar diagnosis experience -- was suddenly, casually mentioned by my opthamologist. I knew I was very myopic for lifetime, but never told by doctor that it can lead to AMD which I now have. Thanks for sharing struggles which I experience as well.😢

Yes, photophobia is constantly a factor for me. Gray days including. Also, I listen to audiobooks & read large print books. Parking lots are a killer for me, every car blends in. I have to say, my faith has helped me be more dependent on the Lord God and I have a peace about my disabilities. Someone told me once that FEAR - Face Everything And Run to it.

Hi, I use breath prayers as a coping mechanism. Plus have fresh cut flowers all around me.

Hi, I have multiple layers of eye diseases. Including wet macular degeneration in my right eye called retinaophy. I was diagnosed at 39 years old & treated with photodynamic laser treatment in 2002 to stop the progression of blindness. I was told this could affect my right eye as well. Every year I have check ups at Wilmer Eye Institute and regularly use an ambler eye grid plus eye supplements. Support has been lacking for me and have to remind my family about this often.

I admire you for your patience and strength. unfortunately I also have my dad with amd, he lost a large part of his vision in a short period of time, very disappointing when I realized that no matter how hard I looked the disease is never cured. it breaks my heart to see him with such a different life. he sits for hours with the radio by himself so you are right about the music. keep up what you are doing and I hope every day that a powerful cure for this is finally found. 🙂

Hello! At what age did you get it?

This is my life a lots headaches and hard to recognize people from a distance

God Bless you Jesus saves, heals, delivers and restores. .. Call upon Jesus ❤❤❤ When my doctors did not inform me I felt betrayed by them Losy trust. W But Why would they do this?? They are trained professionals They know better.. 😥😢

I have not hears of shots for macular degeneration ❤❤

Thank you for posting and sharing your story..I understand Happened to me Going to my optimologist 30 years...never informed me had change in my eyes... I suspected something was not right So I changed doctors Had exam by a sharp optometrist in group .only found out from her when she sent me to have Pictures taken of my eyes..what We saw ..I am so grateful to God for her...explaining what I could barely comprehend This is the reason the doctor who had not told me of my eye condition kept increasing my appointments..and I wondered why..eventually stopping because of not having been informed...because I normally only went once a year for glasses Then I just made an appointment for cataract surgery evaluation.. Thank God or I would never had known my condition I was blessed by Our Lord with the best doctor in the group, highly trained background He told me I has macular degeneration On a scale of the alphabet from.A-Z. I am a " B " level I waa only told by the other doctor I had Drusen Which he never mentioned had to do with macular degeneration But all through the years..I had early symptoms...floaters are part of the symptoms What is call optic migraines losing vision as on eyes like a kaleidoscope Theb recently going black temporarily Partial vision episodes So pay attention to your vision symptoms Sight is a important gift 🎁 God Bless All ..thank God ww found out.. Vitamins ..Areds ..these are call containing Zinc. A, C & E , Zeaxanthin, Selenium, Lutein Copper These slow macular degeneration progress down ❤❤❤❤❤❤❤

I have GA and share many of your obstacles. I have stopped driving even though I have technology have enough vision to do it legally. First I would only drive familiar routes but now I don’t even do that. Reading print even with magnification is a challenge. I am waiting to receive an Irisvision Inspired my low vision therapist recommended I try one. I should arrive later this week. What treatment do you receive? I receive Eylea HD shits in both eyes every 8 weeks. Good luck and Gid bless.

My doctor didn't tell me I had amd. I had two shots that didn't help. Why doctors dont talk

Any where treatment

Thanks for this video, Marie! Very helpful.

Excellent video and tips thanks so much for it 🙏

I have this too, with diabetic retinopathy. One of the scarriest things I think I've ever done is go to the eye clinic at the heart of the pandemic for eye injections... They haven't worked. Now they feel like second nature. The vision in my left eye is no longer correctable. The consultant is now talking about eye implants, with the inevitability of cataracts. I'm scared. As you've said the thought of not seeing my adult children is terrifying, as is the loss of my independence. Sending gentle, understanding hugs xx

I have had a retinal detachment in my right eye and Myopic macular degeneration in my left eye and was assaulted on 08 March 2018 which caused more machanical damage and having laser surgery for my 2 retinal tears and 3 lucentis injections after 3 months I became registered partially sighted which does not allow be to drive any more.My question is I are you registered legally blind ?

I have a small scotoma scar which causes distraction and photo phobia and I have vitreous floaters because of the retinal Hooke surety which causes pripheral and centra vision loss 🥘

You are amazing honestly I have the same condition I’m registered partially sighted it could prevent it if was the assaulted which made it worse

I have the same condition my heart bleeds for you are you registered blind ?

My name is Naveed Ul haq from Birmingham I was -17 in my right eye and -17 in my left eye I had a retinal detachment in my right eye when I was 25 and the optician diognosed it late after telling me it’s an allergic reaction by the time spec savers referred me to the eye hospital and I had an victrotomy surgery I had victrotomy operation with an gas bubble I was left with forvea 1 11:23 scaring which left me with central Vision loss.I had my right eye which compensated for my left eye I was a professional driver until the age of 42 I had a catract in my left eye I had regular check ups and was waiting surgery and one day in my left eye I came across floaters and photo phobia in my left good eye on the same night I was assaulted and the following day I had blood in good eye in the macular and large retinal hole so when I’m the morning I went to A&E at Birmingham eye hospital the Opthamolist advised me I had myopic macular degeneration and the assault may have accelerated it so I had 2 laser surgery for retinal tears and 3 lucentis injections for the following 3 months and was left with a small scotoma and vitreous floaters which healed good but became registered partially sighted which I lost my job and I can’t read and write by looking beyond my floaters and scar and can read the 5 th line on the chart it was an very bumpy ride 😊

I totally agree with finding counseling or support that is familiar with sight loss Once, a well meaning but ill informed professional suggested I try... can't remember if it was drawing or journaling to relax, but an eye-intensive task that was definitely not relaxing for me, but rather incredibly frustrating on top of all the visually demanding tasks that can't be avoided. I love the way you split this video in parts (not sure what they are called) but it makes pausing and coming back later much easier.

What your power you glasses

When I first got diagnosed, one of the first things I checked out was the tech that currently exists and there are some really interesting tools. I'm not as optimistic as you are about gene therapy. Most of what is going on in the US with humans is in the very early stages, but the tech is really nice!

This is true for me as well. It's frustrating but it is also so sad.

Very informative video! You are excellent in describing the condition. Thank you for sharing this with the world :) Best of luck to you with your health journey :)

How old r u if you don't mind me asking?

Judging by your glasses, your prescription doesn't seem that bad. It's odd you developed this?

This is absolutely what I go through. I've noticed in other groups that are mainly AMD how people prefer bright light yet it bothers me so bad. My home is dim lights, unless I need to see for a short time to do a specific task. The bright light, although I can see "clearer", makes the distortions, spots, etc more noticeable. Then I get very dizzy and nauseous the clearer I see. And I lose my balance and run into stuff often. I try to explain to my family and work the best I can and often feel like they don't believe me when things seem contradictory. The driving same issues. Also, I avoid left turns unless at a light because I'm afraid I won't see oncoming traffic. Wow, hearing it all from someone else makes me feel less alone and less crazy. Thank you for sharing your experiences.

You have described my life in a nutshell. I don't have blind spots but definitely do not recognize faces unless they are very close to my face. I too only drive during the day to places I am familiar with. This stinks/I do not discuss this with friends. My husband know what I deal with but he can't possibly really understand. WE have to live our lives and somehow we go on with life.

I hope you better in the future and stay positive.

Oh, Marie! 😢 Every single thing you mentioned is so, so relatable. All of it. Our vision or lack there of must be very similar. And in addition to not driving at night and in familiar areas, I also cannot drive at sunrise or sunset unless I’m going the opposite direction of the sun. The sun is just too blindingly low. - The worst part of all is not knowing what the future holds and the fear of not being able to see my loved ones. I just pray that my peripherals stay in tact at this point!! Sending love Xx

Oh my goodness, you have nailed the whole MMD experience as I live it. I personally don't talk about it much to friends and family but the future is always on my mind. Thank you for sharing your thoughts - it is a comfort to know that I am not alone, although I do not wish this on anyone. God Bless...

I feel your pain! I go through the same anxiety, especially the day before. The injections absolutely put me under for a couple of days, too. That dang betadine! - I too have routine injections right now with no active bleeding and do so since I get bleeds so often. My dry is progressively getting worse, as well. It’s scary and disheartening. Thanks for sharing! Xx ❤

Hi Marie, really pleased you are highlighting this condition . I was diagnosed about 20 years ago with degenerative myopia , which has resulted in both mmd and peripheral vision loss . For a long time there were no specific deport networks or research , but that seems to have changed lately as technology has crasser more cases of myopia with the potential for more extreme cases and complications . Great that there are more people like you trying to make this more public and easier to find out about

Thank you for posting the short on your appointment to get the shots. My appointment is next Monday. I manage to put the appointments out of my mind between them, but last night I got a text reminding me of it and yes, it does just leave me sad. I'm grateful, but still, since I definitely know there has been progression in my right eye, I am sad.