My Shocking Diagnosis: MYOPIC MACULAR DEGENERATION
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- Опубліковано 14 жов 2024
- This video is about how I was diagnosed with Myopic Macular Degeneration (MMD), 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.
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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.
I’m so sorry you went through this! I had a very similar experience where like you, I had a very sudden and dramatic deterioration in my right eye and they simply put it down to dry degeneration. I burst into tears and started having a nose bleed, and the doctor literally got up and left the room, mumbling about ‘having to see other patients.’ I think doctors are not well trained when it comes to handling patients’ emotions.
I agree with you, the lack of research on the condition is very frustrating. I am trying to raise awareness about it with other fellow patients by speaking to researchers as often as we can.
And yes, the uncertainty of this condition can induce such anxiety. Like you, even though I do my best to live in the moment, I do often worry about the next deterioration episode.
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.
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 never thought I was going to find on UA-cam 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.
Thinking of you, I hope you get some answers soon. I have -13 and -14 so not as high as you but I do have mild staphyloma. Wishing you all the best x
How old were you when you were diagnosed ?
I was 39.
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.
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..
😥😢
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!