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I Have MMD
United Kingdom
Registrace 15. 09. 2013
Raising awareness about myopic macular degeneration by sharing my journey of progressive sight loss due to severe myopia.
4 more tips to help you cope with vision loss caused by myopic macular degeneration (MMD)
Are you struggling with vision loss caused by a degenerative eye disease such as Myopic Macular Degeneration? Join me as I share insightful tips to help you cope. From acknowledging your emotions to grounding yourself in the present moment, these strategies will help you navigate the challenges of sight loss. Don't forget to subscribe for more helpful insights and share this video with anyone who might benefit!
Myopic Macular Degeneration (MMD), a sight-threatening condition resulting from high or pathological myopia. It is sometimes called degenerative myopia and is the second most common cause of blindness in the developed world, after age-related macular degeneration (AMD). Patients are typically diagnosed between the ages of 20 to 50, directly affecting their ability to contribute to society.
It is all too often considered a rare disease and is therefore woefully under-researched and often under-diagnosed. Its incidence is nonetheless rapidly increasing around the world, with an estimated 40 million people currently suffering from it, a figure that is predicted to rise to 100 million within the next 25 years.
Patients are often mis- or partially diagnosed, left-as I was-to fill the gaps online at the risk of finding inaccurate or misleading information.
There needs to be a drastic change in how patients with MMD are diagnosed and treated. And needless to say, there needs to be active research for treatments. I hope to raise awareness about this by sharing my story.
MORE ABOUT MMD
www.myopicmaculardegeneration.com
www.macularsociety.org/macular-disease/macular-conditions/myopic-macular-degeneration/
SUPPORT GROUPS
groups/920295102043886/?ref=share_group_link
share/2uNnR3xvxYY4uACC/?mibextid=K35XfP
Myopic Macular Degeneration (MMD), a sight-threatening condition resulting from high or pathological myopia. It is sometimes called degenerative myopia and is the second most common cause of blindness in the developed world, after age-related macular degeneration (AMD). Patients are typically diagnosed between the ages of 20 to 50, directly affecting their ability to contribute to society.
It is all too often considered a rare disease and is therefore woefully under-researched and often under-diagnosed. Its incidence is nonetheless rapidly increasing around the world, with an estimated 40 million people currently suffering from it, a figure that is predicted to rise to 100 million within the next 25 years.
Patients are often mis- or partially diagnosed, left-as I was-to fill the gaps online at the risk of finding inaccurate or misleading information.
There needs to be a drastic change in how patients with MMD are diagnosed and treated. And needless to say, there needs to be active research for treatments. I hope to raise awareness about this by sharing my story.
MORE ABOUT MMD
www.myopicmaculardegeneration.com
www.macularsociety.org/macular-disease/macular-conditions/myopic-macular-degeneration/
SUPPORT GROUPS
groups/920295102043886/?ref=share_group_link
share/2uNnR3xvxYY4uACC/?mibextid=K35XfP
zhlédnutí: 650
Video
My Top 4 Tips to Cope with Myopic Macular Degeneration (MMD)
zhlédnutí 441Před 4 měsíci
Are you struggling with vision loss caused by a degenerative eye disease such as Myopic Macular Degeneration? Join me as I share my top four coping strategies to navigate through the emotional challenges. From reaching out to loved ones to seeking outside support, these tips will help you feel less alone on your journey. Don't forget to subscribe for more helpful insights and share this video w...
7 Daily Struggles with MYOPIC MACULAR DEGENERATION
zhlédnutí 1,4KPřed 5 měsíci
As a patient with Myopic Macular Degeneration (MMD), there are things I struggle with daily. From dealing with distortions and blind spots to challenges with recognizing faces, in this video I tell about the impact of my condition on my daily life. Subscribe to my channel to follow along with my story and show your support for patients with MMD. MMD is a sight-threatening condition resulting fr...
What is Myopic Macular Degeneration (MMD)?
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What is Myopic Macular Degeneration (MMD)?
My Shocking Diagnosis: MYOPIC MACULAR DEGENERATION
zhlédnutí 1,5KPřed 6 měsíci
My Shocking Diagnosis: MYOPIC MACULAR DEGENERATION
We need to talk about myopic macular degeneration
zhlédnutí 726Před 6 měsíci
We need to talk about myopic macular degeneration
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
Thank you! Wishing you all the best.
You are already doing an amazing and brave work. Enjoyong life to the fullest with what you have been given 🫂
Thank you so much 🙏❤️
You ever considered icl?
"Wow, your video is incredibly informative!"
Thank you!
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 feel you! Both my eyes starting having bleeds within a few weeks of each other, too. I didn’t even know that myopic macular degeneration, wet or dry, was a thing. I so know what you mean about losing your sh*t. At the moment I’m going through a deterioration of my “good” eye and all my philosophical attitude about adversity seems to have gone through the window. I’m a bit of an emotional wreck at the moment. Sending you positive thoughts.
@@Ihavemmd It can be hard. Let's be honest, it sucks. It's okay to feel bad about it. We are losing something, and we will grieve for that loss. It's not a negative reaction, it's normal. It's okay to let yourself feel it. The parts that affect our independence are particularly difficult to deal with. Our fears can be hard too. For example my family has a history of hearing loss midlife. I'm TERRIFIED I'm going to end up blind AND deaf, but that's okay. If anything, that fear just drives me to be more careful with my hearing. Being proactive has helped me more than anything else. I bought 3D gemstone adhesive stickers from the crafts section of the dollar store in different shapes and colors. They are on all the appliances I use to mark important buttons or settings. Or other things, like the side of my pill case so I know what side the week starts on. Sometimes I wrap rubber bands around things I want to identify easily or in the dark. For Christmas I've been focusing on smart things I'll be able to use now or in the future. Like my air fryer might be touchscreen, but I can just tell Alexa to set it at a certain temp for x minutes and it works. It makes my life feel less scary to know I'll be able to continue doing these things on my own, even if a big bleed happens or I wake up some morning no longer able to read a damned thing, which has happened before but thankfully healed(mostly). Everyone has different things that will help them feel more secure. For me it was setting up things for "just in case". It might be different for you. I hope you find that something! Also, I saw that one of your fears is not being able to see your children's faces. Maybe you could start getting videos with sound where they talk so that even though the memory of their faces may fade, their voices can always be there. Basically, blind pictures for the future. I don't know if it's something you'd want, just a random idea. I'm sending hugs your way though. We can all use a hug sometimes!
@@kohlfrog Oh my gosh, I am so with you about the fear of hearing loss! There is a history in my family too, and since being diagnosed with MMD, I am always very careful to try and preserve my hearing as much as possible. Regarding my children’s faces, it’s more the fear of not seeing their adult faces once they’ve grown up. But that’s my propensity to catastrophize. Who knows what treatment might be available by then.
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.
It seems that a lot of us mmd patients get told about things in passing rather than during a serious, in-depth conversation about our condition. It is so annoying.
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.
I love your take on it! I will remember this 😊
Hi, I use breath prayers as a coping mechanism. Plus have fresh cut flowers all around me.
It sounds lovely ❤️
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?
I was diagnosed with diagnosed at 39 but in hindsight I think it started in my early 30s.
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 ❤❤
They are the standard treatment for wet (bleeding) macular degeneration. Shots for dry MD have just been approved in the UK as well.
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
I am so sorry. I agree with you, doctors should be trained to be transparent with their patients. All too often, they just see us as walking retinas and not much more!
Then you have a very lousy healthcare system. If a doctor here in the US refused to tell a patient he had something as serious as AMD, he'd be sued and not allowed to practice medicine again. Like why would your doctor refuse to tell you this?
@@superstrangevideo Thank you for your comment. Please remember to keep comments courteous and constructive, as this channel is meant as a supportive community. Thanks! 😊
@@superstrangevideoI'm from the USA and I saw multiple ophthalmologists over the course of about 7 years before one of them told me I had MMD. And the only reason I was told was because I asked why he was referring me to a retina doctor and what was causing my problems. He, like all the others, seemed to think I'd already been told, except I hadn't. Even my new doctor didn't tell me I was developing cataracts(a side effect of the treatment.) My new one was the only one who told me that I'm basically screwed because my dry MMD is getting worse pretty rapidly and there's not a damn thing they can do about it. That the CNV may cause the most sudden changes, but at least it's reasonably treatable. I had soooo much dry damage already when I was told my diagnosis. I was never told about the MMD, the myopic lattice degeneration, the retinal atrophy and pigment changes, the optic nerve atrophy. No one told me about any of it or told me what I might experience because of it. I was seeing ophthalmologists once a year for visual field testing because I was on plaquenil and it can cause damage. Thankfully it never did, but that doesn't make a lot of difference now!
Any where treatment
Treatments for MMD are very limited at the moment. I will make a video on that topic soon.
Thanks for this video, Marie! Very helpful.
Excellent video and tips thanks so much for it 🙏
My pleasure! Thank you for watching!😊
Just curious do you have dry eyes and if you do how do you deal with it other than eye drops??? Definitely talk about that topic too I suffer badly with dry eyes with MMD.
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
Hugging you back. I hope better treatments become available for us soon 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 ?
Please
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 ?
No, I still have enough vision to be considered sighted. Sadly this might change as the disease progresses. So sorry you suffer from it too ❤️
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
-13/14
Iam wear glassess too. My myopic two eyes myopic 9
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?
I’m 42, diagnosed at 39.
Do you get like shaky vibrating edges? As my vision has gotten worse I've noticed this weird effect where straight edges of things look like they are vibrating. Door frames are most noticeable for me. When the door is open the door frame looks like it's shaking back and forth really fast. Box edges, etc. It happens with other edges too, but it's definitely more noticeable on straight edges.
Judging by your glasses, your prescription doesn't seem that bad. It's odd you developed this?
My glasses have high index lenses, so compressed to reduce weight and thickness. My prescription is -13.
My prescription is also -13! I have MMD with CNV. Faces have definitely become a problem. I use stature, hair, clothing, stride and such to recognize people a lot more than I do with faces, especially outside. I was diagnosed with MMD about 7 years ago, and my first CNV was about 5 years or so ago. When I was diagnosed, one of the first things I did was come to CZcams to look for others who had experienced it. That was the first time I realized it was pretty uncommon. Then when I asked my first retina doctor how many patients she had treated with my condition, I found out that number was zero. She works in a metropolitan area with a population of over 3 million for a company that exclusively treats eye disorders like AMD and such. So finding out that I was not only the only patient she ever treated with it, but the only person she'd heard of with MMD was rather shocking to me. Though I wouldn't wish MMD on anyone, I'm very happy to see someone posting their experiences with it!
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.
And the sunglasses, sometimes I have to wear them at work when it's just too unbearable. But I rarely do, because people often assume the worst or want to inquire in a caring way. Outside of work Idc and even where them at home when on the TV when needed.
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
Also, I don’t hear too often about the lights in The blind spots. Many people just say the have a grey spot only (jealous! 😉). While my spots are grey or my brain makes them to appear to be the color that I’m looking at, they also sparkle and swirl. Especially in the bright lights and in the dark. I have a full on light show when I go to bed. It’s so disturbing and makes this disease even harder to ignore.
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 ❤
Oh my gosh, I could scream when they put the betadine in. No amount of numbing drops is enough to relieve that horrible burning feeling! Thank you for sharing your experience, too! xx
Some people i talked to with this condition only needed one to three injections for the past decade. Why do you think that is? @Ihavemmd
@@badreddinegacem That is a great question, and one that I sadly have no answer to! It seems that retinal specialists don't know either, which to me shows the urgent need for more research on our condition. Another mystery is why MMD seems to affect so many more women than men.
@Ihavemmd They say stem cell research is really promissing, what do you have to say about that!
@@badreddinegacemIt is indeed very promising, as highlighted by this conference held by the Macular Society czcams.com/video/e9AHeIz4lZg/video.htmlsi=jJOOYzcElMV6AkiY We need MMD-specific trials to move things forward.
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 Sandra! MMD does indeed need urgent recognition and I hope my channel can help a little towards this. All the best.
I had peripheral and night vision loss starting in my early 20s. I'm 37 in a few months. No one told me anything until I was 30. I'd been seeing ophthalmologists the entire time! Apparently they all assumed that I'd already been told. Even after that, I was told that my peripheral vision loss wasn't related to my MMD. My newer doctors have acknowledged that it is, but it's not really talked about. I have this ring of pretty good vision, but inside and outside of it both suck lol.
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.
I feel you and hope your appointment goes as well as possible. Big hugs.
I have a fuchs spot in my right eye, doc told me after i noticed distortion in my right eye and I got an eye check!
Is there any research on MMD happening at all? There are two new drugs for dry AMD but I’m not sure if they would work for MMD.
As far as I’m aware, there is currently no research on MMD, at least not in the Western world. Asia seems to be more aware of it due to the very high incidence of myopia there, but because of the language barrier, their research papers are not easily accessible in the West. We need to catch up!
Thanks for sharing. Stay strong.
Thank you so much!
Thanks for sharing.
Thanks for watching! 😊