7 Daily Struggles with MYOPIC MACULAR DEGENERATION
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- Опубликовано: 3 мар 2024
- 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 from high or pathological myopia. It is sometimes called degenerative myopia It 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 a cure. I hope to raise awareness about this by sharing my story.
MORE ABOUT MMD
www.myopicmaculardegeneration.com
www.macularsociety.org/macula...
SUPPORT GROUPS
groups/92029...
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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.😢
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...
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.
This is my life a lots headaches and hard to recognize people from a distance
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.
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.
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.
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 😊
I hope you better in the future and stay positive.
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 🥘
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
What your power you glasses
-13/14
Iam wear glassess too. My myopic two eyes myopic 9