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Anyone have intermediate Macular Degeneration

Eye Conditions | Last Active: 2 days ago | Replies (75)

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@prayingtolucy

I am going to reply to everything soon. I do want to ask where you live, state? I've been to the John's Hopkins Wilmer eye institute last August. It is the opthalmologists there who told me I have decades before this will affect me. Now, my 2nd retina specialist says the same thing. I live in Maryland just outside of Baltimore. I would love to visit the Bascom Palmer Eye Institute in Miami Florida. I'm trying to work it out.
Also, the Photobiomodulation (red light therapy) was FDA approved in November 2024. My specialist is not getting a machine but he thinks Hopkins may. He says the results are not plentiful, for a lack of another word, for him to invest in at this time.
Also, were you ever diagnosed with early Macular Degeneration or have you only known for the 10 years of intermediate MD?

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Replies to "I am going to reply to everything soon. I do want to ask where you live,..."

One advanced alternative is the ForeseeHome device by Notal Vision. This FDA-approved home monitoring system employs preferential hyperacuity perimetry to detect subtle visual changes indicative of conversion from dry to neovascular AMD. Clinical studies have demonstrated its efficacy; for instance, the AREDS2-HOME study reported that 94% of patients using ForeseeHome who developed neovascular AMD maintained visual acuity of 20/60 or better at the time of conversion, compared to 62% with standard monitoring.
REVIEWOFPRESBYOPIA.COM

However, real-world application of ForeseeHome has revealed challenges. A retrospective analysis indicated that while 83.7% of prescribed eyes used the device at least once, 26.3% couldn't establish a baseline measurement necessary for effective monitoring. Additionally, patient compliance decreased over time, with 24.7% discontinuing use within the first year.
PMC.NCBI.NLM.NIH.GOV

For those seeking more accessible options, smartphone-based applications like Alleye offer promise. Alleye uses an alignment hyperacuity task to detect early visual function changes and has been validated in clinical trials. It allows patients to monitor their condition conveniently, though it requires consistent self-administration and may not be suitable for all individuals.
REVIEWOFPRESBYOPIA.COM

In summary, while tools like the Amsler grid are widely used, devices such as ForeseeHome and apps like Alleye provide more sensitive and reliable methods for early detection of AMD progression. It's essential to consider factors like ease of use, patient compliance, and accessibility when selecting a monitoring method. Consulting with an eye care professional can help determine the most appropriate option based on individual needs and circumstances.

Glad to hear your prognosis is good. I cant imagine they could give you solace without knowing your genetic mutations IF ANY that could contribute to your early diagnosis of AMD in your fifties. This Alleye looks interesting, already tried years ago to interact with the Foresee people and came away with it just wasn't worth it.
Look at the Jan 2025 Jama article ( it’s not paywalled ) on photo modulation in a clinical setting. it, they were not impressed.

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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.

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.

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!