Is a cure on the horizon

Posted by prayingtolucy @prayingtolucy, Jan 1 5:08pm

Does anyone with AMD feel a cure may come in our lifetime. I'm 56 and probably 20 -25 years younger than most with this life robbing disease. I'm fearful I got it too young to ever profit from a cure years down the road.
I'm just trying to eat for my eyes as if they were my heart. Apparently, there's a link between heart health and eye health. Has anyone else been told that by your specialists?

Interested in more discussions like this? Go to the Eye Conditions Support Group.

@mablesmith

In August, 2022, I went to my ophthalmologist for a yearly visit. He found leakage in my right eye, referred me to retina specialist. The specialist found dry MD in left eye and wet MD in right eye. I received an injection that day in the right eye and have periodically (about 11 to 15 weeks) received injections. The specialist says the only thing to be done for the dry MD is vitamins and diet, green veggies especially. Also, dry MD can become wet MD. I'm losing central vision in the left eye, dry MD. I didn't know what you referred to as GA. My specialist's never mentioned injections for dry. I have an appointment January 23rd, I'll ask her about that. I researched GA. Very interesting. In all the reading I've done I'd completely missed this information. Thank you for asking that question. I don't think I'm that far gone. I'm finding my husband's face is blurry when he's across the room. That and the amsler eye grid is my measuring rod. Please forgive my "epistle" being so long.

Jump to this post

Yes, there are now injections for GA which is the late stage dry AMD. Is your husband's face blurry even with the injections for the wet?
How old are you now? If you don't mind me asking.
How long ago were you first diagnosed? Were you early or intermediate at your diagnosis?
SYFOVRE is an FDA-approved treatment proven to slow GA (late stage dry AMD) in as few as 6 doses per year. It FDA approved February 2023.

REPLY

In November 2024, the FDA approved photobiomodulation for dry AMD. It's best for vision 20/120 or better. I'm not sure how far you are but it's something to look into if your vision in the dry eye meet the requirements.

REPLY
@mablesmith

mostlyjackie; I was diagnosed with wet AMD in right eye and dry AMD in left eye in August, 2022. I receive injections in the wet eye. However I'm losing central vision in the dry eye. Other than a healthy diet and vitamins there's nothing to be done for the dry. No one in my family has had AMD.

Jump to this post

I also have no one in my family with AMD. My RD assured me that my parents must have both had the recessive gene. Lucky me. The loss of central vision in what you identify as the "dry eye" is concerning. Are you sure it hasn't turned wet? My doctor has said my dry eye will eventually turn wet. No doubt about it. I am encouraged by the Johns Hopkins study that reports 30% of people with AMD won't require injections after getting them for a year. I don't expect that to be true forever, but mine are now scheduled four months apart. I'm going to extend that by a month each time I go. We'll "see" what happens!

REPLY
@prayingtolucy

Mine must have started at 52 or 53 and progressed to intermediate without me even knowing I had it. I mean within 1 to 2 years it progressed to intermediate. And apparently progression at that rate from beginning to middle is uncommon since dry is usually slow progression. I don't know why this happening at my age. I just don't know.
How old are you now? How long has it been wet? Is yours more genetic?
How are you doing with the injections? Have they been helpful?
Thank you for replying.

Jump to this post

I believe I had AMD sometime in my early to mid 50s. I didn't get it diagnosed until several years later, but I wondered why my eyes were suddenly very sensitive to light and I realized I was colorblind. My eyes also changed from bright blue to green, and I'm not sure why that happened! I'm 65 now with one wet and one dry eye. I've been getting injections for just over a year. Although nobody in my family has AMD (not parents/siblings/grands/cousins/aunts/uncles), my doctor said each of my parents must have had the recessive gene. I guess it's all believed to be genetic. I've extended the injections out to every 4 months, increasing that every time I make a new appointment. They have not been bad other than my doctor treats way past his capacity, so it's a whole day at his office. My vision is normal again. I am grateful I will never lose my sight (according to my doctor).

REPLY
@mablesmith

mostlyjackie; I was diagnosed with wet AMD in right eye and dry AMD in left eye in August, 2022. I receive injections in the wet eye. However I'm losing central vision in the dry eye. Other than a healthy diet and vitamins there's nothing to be done for the dry. No one in my family has had AMD.

Jump to this post

Btw, I'm in the PreserVision commercial! I say, "I was scared when I was first diagnosed with AMD." Then some other stuff, but that's how it starts.

REPLY
@mostlyjackie

I believe I had AMD sometime in my early to mid 50s. I didn't get it diagnosed until several years later, but I wondered why my eyes were suddenly very sensitive to light and I realized I was colorblind. My eyes also changed from bright blue to green, and I'm not sure why that happened! I'm 65 now with one wet and one dry eye. I've been getting injections for just over a year. Although nobody in my family has AMD (not parents/siblings/grands/cousins/aunts/uncles), my doctor said each of my parents must have had the recessive gene. I guess it's all believed to be genetic. I've extended the injections out to every 4 months, increasing that every time I make a new appointment. They have not been bad other than my doctor treats way past his capacity, so it's a whole day at his office. My vision is normal again. I am grateful I will never lose my sight (according to my doctor).

Jump to this post

You basically had AMD for several years before you were diagnosed. Were you diagnosed late stage/wet at your initial diagnosis? You were not going for regular appointments before you noticed things changing? I apologize for all of the questions I'm just trying to learn everything I can. I went annually for exams and always had good visits then COVID hit and it was hard to get an appointment so I went only two years without an exam then I find out I have intermediate... How did I not know I had early??? I'm about to order my eye exam records going back a few years so I can see what was actually written at my exams. Something doesn't add up. All of my research says early usually progresses to intermediate over 5-8 years. 1-2 years is unheard of. I hope I don't find out I was never told. I hope to God I don't find out the doctor decided not to share that information. I could have been changing a lot of things had I known.
I just found out this year that my father had AMD and my aunt now has it. Why I didn't know will be a lifelong mystery. My dad lived a very independent life, he lived alone, and continued driving until three months before he passed at almost 90. I tell my children and grandchildren that they had an amazing pop. He was a survivor.
You are receiving injections for wet and they seem to be working? You can see good now? Reading, driving, face recognition? Please ask your doctor soon about the dry eye injections. I'm not sure if you have to have late stage /GA. Are you still color blind or is that fixed with the injections.
Which state are you in? I'm in Maryland.
I've been seen by four different doctors and they all seem to think this will not affect me for decades. I want to believe that then I meet people in their 60s with wet AMD n getting injections. IDK what to believe. I just hope that staying healthy, eating healthy, intermittent fasting, walking, taking vitamins will prolong the progression. I'm starting to think it won't because I felt I've always been pretty healthy and here I am with an eye disease most don't have until their 70s and 80s. I'm 56. I'm scared.

REPLY

When I lived in NY, the guy that was supposed to be looking at my retina was basically a scam-artist (I realize that now). So when I moved to Florida and had my eyes examined, the doctor said, "So, did you have an eye injury?" Then he looked at the other eye and said, "Oh, no. So, you have Macular Dystrophy." I went to an opthalmologist who confirmed it was AMD. You probably know that it's really a waiting game until you either turn wet or (in most cases) it remains dry. So, even if I were diagnosed early on, I don't think it would have changed much. I wouldn't beat yourself up much about the quick progression. I don't think you could have done much to thwart it.
That doctor saw me every six months and would just say, "You're stable; keep taking the vitamins." I don't think he ever said I was early, intermediate, or advanced. Eventually, when I realized the lines on the Amsler Grid were no longer straight, I got into my doctor and he referred me to a retina specialist. Thus, wet AMD in my right eye. When I auditioned for the PreserVision commercial, I mentioned that every doctor said, "But you're too young to have AMD," and I'd always say, "Well apparently that's not true!"
The injections have been a game-changer. My vision (with correction-I've always been very near sighted) is 20-20. My retina doctor claims I won't lose my eyesight, will always be able to drive, etc. Don't be scared. This is not a blind-death sentence! We are living in an amazing time! They say there's no cure, but eventually if I only need an injections once a year, I'm good with that. A Johns Hopkins study showed that 30% of us will only need a year of injections. I don't know how long that will last, but it's promising. I am healthy in just about every other way, and am grateful this diagnosis is not going to kill me (or cause blindness)!

REPLY
@mostlyjackie

When I lived in NY, the guy that was supposed to be looking at my retina was basically a scam-artist (I realize that now). So when I moved to Florida and had my eyes examined, the doctor said, "So, did you have an eye injury?" Then he looked at the other eye and said, "Oh, no. So, you have Macular Dystrophy." I went to an opthalmologist who confirmed it was AMD. You probably know that it's really a waiting game until you either turn wet or (in most cases) it remains dry. So, even if I were diagnosed early on, I don't think it would have changed much. I wouldn't beat yourself up much about the quick progression. I don't think you could have done much to thwart it.
That doctor saw me every six months and would just say, "You're stable; keep taking the vitamins." I don't think he ever said I was early, intermediate, or advanced. Eventually, when I realized the lines on the Amsler Grid were no longer straight, I got into my doctor and he referred me to a retina specialist. Thus, wet AMD in my right eye. When I auditioned for the PreserVision commercial, I mentioned that every doctor said, "But you're too young to have AMD," and I'd always say, "Well apparently that's not true!"
The injections have been a game-changer. My vision (with correction-I've always been very near sighted) is 20-20. My retina doctor claims I won't lose my eyesight, will always be able to drive, etc. Don't be scared. This is not a blind-death sentence! We are living in an amazing time! They say there's no cure, but eventually if I only need an injections once a year, I'm good with that. A Johns Hopkins study showed that 30% of us will only need a year of injections. I don't know how long that will last, but it's promising. I am healthy in just about every other way, and am grateful this diagnosis is not going to kill me (or cause blindness)!

Jump to this post

Which part of Florida are you living? The leading retina specialist is in Miami, Bascom Palmer Eye Institute, and I hope to been seen by them one day.
If you're taking AREDS2 then you are intermediate stage because AREDS do nothing for early stage.
I was told once that I most likely have a Pattern Dystrophy but that has been supported by none of the other specialists I've seen. I think that specialist can't believe I would have AMD at the age mine started but it did. Just like you.
I know it's hard to be afraid of the future with this despicable disease. But it's hard not to be. I'm only 56 and I'm very active and love life. I just hate that I may never be able to enjoy the things I've worked to hard for in my future retirement. I hope I don't sound selfish.
I've been told by doctors and people I've met on here, just like you said, it's not a blind-death sentence. I hope not. I sure hope and pray I don't lose my independence or can't drive anymore. I just don't know why this started young in me or you for that matter. I just hope I'm not late for a cure if it ever comes to be.
I think it's neat you're in the preservision commercial. Which one? Maybe I'll see you.
BTW, I have brown eyes, light/golden brown according to my opthalmologist, brown hair and olive skin. So dis my dad. Go figure, when they can't blame it on being blue eyed/light hair, fair skin, Caucasian, European lol they blame it on genetics.

REPLY
Please sign in or register to post a reply.