Anyone have intermediate Macular Degeneration
Hello,
I'm interested in hearing people IMD.
I like reading people's stories, how they deal with it, what they are experiencing and if they've learned of new treatments or cures coming down the pike.
I pray every day that I can grow old while maintaining my good central vision. I pray that I am young enough to one day benefit from more permanent treatments, less invasive treatments, and even a cure. Research has been ongoing for such a long time that sometimes I think there may never be a cure. I will not give up nor will I stop praying.
I hope we can get a chat going here. ❤️
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Photobiomodulation for Age-Related Macular Degeneration | Ophthalmology | JAMA Ophthalmology | JAMA
Jan 2025
Article was doubting the clinical research.
I wouldn’t put any hope on it.
LIGHTSIDE trials, which evaluated photobiomodulation as a treatment for age-related macular degeneration (AMD). The authors express skepticism about the efficacy of this therapy, suggesting that the trial results do not support its widespread adoption. They recommend further research to conclusively determine its benefits. Therefore, while the findings may not be entirely negative, they do cast doubt on the current effectiveness of photobiomodulation for AMD, indicating that more evidence is needed before it can be considered a reliable clinical procedure.
This is a summary from JAMA a prestigious peer reviewed publication.
Since you live near DC you should look for clinical trials. I would move anywhere for stem cells! I will stick with my low dose Rapa ( MD supervised) it reduces inflammation and that’s my Y402H allele issue. I live in central VA. You are near Wilmer or Hopkins . Personally, I wouldn’t venture to Miami. Can’t get the continuity of care you can locally. My retina doc did a fellowship at Miami and I guess he will be ok if i need the anti- veg. shots. Interesting that you got a “decades” away prognosis but you are still questioning and not satisfied. If I were you I would accept the doctors’ good news and don't chase the illusion of a cure now.
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Wouldn't try without a retina MD approval. Rat studies show SkQ1 has benefits.
Wilmer Eye Institute (Johns Hopkins University, Baltimore, MD):
Dr. Hendrik P.N. Scholl: A prominent figure in retinal diseases, Dr. Scholl's research encompasses gene therapy and complement system modulation, which are pertinent to AMD treatments.
Dr. Mandeep Singh: Specializing in stem cell and gene therapies for retinal diseases, Dr. Singh's work includes exploring metabolic and mitochondrial aspects of retinal health.
These researchers at Wilmer you need to get to know . No need to go to Miami unless for a clinical trial.
The reason I am thinking about Bascom in Miami is because they are one of the top, if not the top retina clinics in the country and I'd like to have them take a look and give their opinion. I would not expect to make them my primary retina specialist unless they discovered something so amazing or disturbing that it warranted my relocating to Miami. Plus, people get 2nd and 3rd opinions all of the time.
Yes, I've been told by the Wilmer Eye Institute (JHU) and my primary Retina specialist as well as my primary opthalmologist that they believe it will take 20-30 years before the Macular Degeneration affects me.
Doctors are human just like the rest of us just because they think this will take.decades to progress doesn't mean it will. It's not unheard of to be diagnosed with it in your 50s, and yes, it is an Age related disease that progresses faster for the elderly 70s and up, than it does in someone much younger like 50s and 60s, unless the person brushes it under the rug and doesn't take it seriously. I believe a lot of people do especially younger more healthy people because they do not believe it could happen to them.
I am a researcher, that's what I do and enjoy doing. I can't just sit back not trying to figure out what is going on inside of me. I want to know everything about it and any and all research that is going on. I want to know how it is affecting others with it and how they deal with it. Also, how the treatments are working for them if they have progressed to wet or dry . I never want to be blindsided. Education is the best medicine. This is a part of me, it's a part of my life now and I feel if I sit back and do nothing, just "Satisfied" because doctors have told me they believe I have decades before it affects me that I'll become lazy about it, brush it under the rug and end up missing something when it's available. I will just be "satisfied," with it. I will never just be satisfied. Even if the stem cell becomes FDA available and it's a success, I will never let my guard down medical successes fail all of the time.
You do realize that research and treatments have jumped forward by leaps and bounds over the past few years? There's even an injection for GA, that's newly approved. Last year there was absolutely nothing available for dry AMD but AREDS2 and a healthy diet, honestly, I'm more puzzled by that one than anything else. Today, there are multiple treatments for the wet stage as well.
So to tell me not to chase the "illusion" for a cure is like telling me to give up, or that you have given up. I'm only in my 50's, I have a lot of life ahead of me to live. There are a lot of new treatments close to approval and release even possible cures. I'll never give up hope of a cure. I believe something good will come while I'm still able to benefit from it.
I use Consumer Labs to know which ARED2 formulation lives up to what the label says it contains. Supplements and Vitamins are not regulated in the US. This service has a yearly cost.
I use CharGPT, extensively, to help me understand my AMD disease its free to download the APP. It can make mistakes and I use a paid upgraded version. It’s amazing. Wish AMD research took off like a rocket like the AI revolution but the neurological systems are so complicated that in the ten years I have had AMD only the vascular aspect of the disease only that’s only 12 percent of the AMd population got the anti VEGF shots. I am pessimistic about the new GA drugs, they don't repair the retinal damage that has gone, one retina cell is gone, it never regenerates itself and the new GA drugs are not very successful in stopping the GA progression. Just ask chatGPT!
I have wet macular degeneration in both eyes... I have been getting shots in both eyes for over a year. Recently my right is not responding to the shot I am losing some sight in the eye.. which is upsetting. I got back in a few months and looks like I will get shot in left eye only... At this time there doesn't seem to be anything to help the right eye...Keep moving along!
I already think outside the box and take drugs and supplements that most don't for intermediate dry. I believe that is the only way to stop the disease because Allopathic medicine has done nothing but give us : Take your vitamins and look at your chart and when your eye explodes call me ? You actually think great strides have been made in the cure for AMD you must not have consulted chatGPT. I am a lawyer not a scientist but chatGPT has more knowlege about your condition you need to explore. Besides you haven’t used genetics to understand your condition because you follow the strict allopathic route. Your retina doctor doesn't care so you don’t care but there wont be decades before you succumb to your disease with certain DNA allele variants! There is no cure for AMD and there is nothing in the pipeline. I am betting with the regime I use now I will outlive GA or Wet and that’s way more than the over the counter vitamins that they advise.