Anyone have intermediate Macular Degeneration

I am independent and driving and plan to stay that way. My closest Aunt, who I am most like, led string dancing at her 100th birthday and served lunch the day she died at 104 years. Slowing down is not part of my plan

I would be interested to know how many females are diagnosed with AMD are also on HRT. My MD wants me to take it for the first time at age 75 because of my intermediate dry AMD condition. He says
that estrogen is protective and surely I would not have this condition if I had been on HRT. He is a MD who just practices preventive medicine. He is not a retina doctor. He says it will help with the progression. I haven’t taken it so far because my other MDs take the conventional route. It is not conventionally advised to take low dose estrogen at 75. I think it’s important to know how to ask ChatGPT questions about the supplements other than ARED2 that are helpful. All the retina specialists are just going to give you the routine or conventional take: Take AREDS2 and wait, look at the amsler chart. I found out from “23 and me “ that I have the worst prognosis, thecdouble Y402H alleles in the CFH family from both parents but my AMD did not start in the fifties. My CFH DNA with these mutated alleles have the worst prognosis. I use the off label longevity drug rapa or sirolimus very low dose 5 mg with a MD’s prescription and supervision. It has been 8 to 10 years now still diagnosed with AMD and it’s at the intermediate dry. I use a low vision optometrist for driving glasses. I take more supplements than conventionally advised by a retina soecialist like Mitq foreyes, NMN, NAC, Melatonin etc all found from reading articles on intermediate dry AMD research and from the advice from a science website Admin who also has dry intermediate I haven't been to Wills, Wilmer or Duke, the top eye hospitals near me but I will visit each to introduce myself so tha when the clinical stems cell trials are more frequently conducted I might be considered given my DNA mutations. chstGPT gave me the names of the intermediate dry AMD studies currently underway and the MDs there who are the principle intermediate dry AMD researchers. I use the eyecharger device, a red led 670 hz flashlight used in the mornings for 3 min each eye to stimulate the mitochondria of which ChatGPT approves and this device is the result of the research if Dr Jeffrey at Univ of London neuroscience dept. Of course my retina doctor had never heard of eyecharger although photo modulation is now being researched and may be implemented in clinical settings for intermediate dry AMD. AMD is a disease of mitochondrial dysfunction. Most with AMD disease (like 50 percent) will have a DNA mutation component which causes mitochondrial dysfunction and disruption to the eye’s immune system in those who environmental factors are also present like having being a smoker —but hopefully not the worst scenario like mine. Research ChatGPT found research articles that report that my DNA mutations quickly progress to geographic atrophy. It’s very important to take AREDS2 and see a retina doctor 2x a year. There are subscription devices you can use that are a home monitoring device. You look into them daily and it reports back to monitoring station to gauge if your eyes have changed for the worse. I looked into it - didn't like the bureaucratic management. At my age and for the long time I have been in the intermediate stage I can’t just “wait and see “ for just the FDA approved modalities like those who can who are diagnosed in their fifties,

It's not part of mine either! But I am afraid of my future.
I hope you do not mind me asking you questions?
I know you mentioned having another retinal disease but do you actually have Macular Degeneration? And since you are receiving shots, how long, how many years do your doctors think you've had it?

That's awesome about your aunt and her longevity. She didn't AMD correct?
I asked about your independence in regards to the AMD, then I wasn't sure if you actually have it or if the retina disease you do have is just similar to it and treated with eye injections like wet AMD.

Wow! It sounds like you are doing everything right.
In answer to your question, I had regular eye checkups but skipped one due to COVID lockdown. So I was diagnosed about 18 months after my previous exam.
With the treatments, my vision is good with no curtailment of activities, except that I no longer can ski when the light is flat. But at 73, I can live with that!
All good luck to you, and keep up the good work!

I have macular degen, getting shots in left eye (wet) for 10 years now. Yes ARED2 vitamins are good. Just make sure you have the best retina doc around. Yes, I live alone. 20/30 vision. Hang in there!

The average age for a diagnosis of AMD is 75. The earliest is late 50’s. That’s the science. If you have AMD in your 50s your prognosis is much worse. If it were me and I had AMD early in my late 50’s I would suspect a strong DNA component. I would get genetic testing from the Mayo Clinic to find my CFH gene or relevant mutations or alleles which predict my prognosis to geographically atrophy. It’s not expensive. If there wasn't a strong DNA component found and I had early AMD in my 5Os I would look to what lifestyle choices I could make - not just simply taking AREDS2. Also I would ask do I have APOE4 in addition —the type of DNA that is the Alzheimer factor. If so, I would find out if APOE4 is a factor in my AMD here. I would look at the Lactobacillus Fermentum ME3 a gut bacteria that produces one of the strongest antioxidants. I would look into probiotics or a gut malfunction and other reasons for an early diagnosis if a DNA mutation that causes mitochondrial dysfunction was not found.

Yes to all those recommendations. My right eye is a little worse than the left. He crumpled a kleenex and said if my vision suddenly looked crumpled like the kleenex to call him immediately. I can't imagine not being able to knit, sew or cross stitch. I do notice that over the last year my eyes get tired more easily. I am 74.

Thank you for posting here. I made an appt with my hospital’s genetics DNA testing dept . I know from “23 and me “that I have double Y402H, a bad mutation which is a AMD factor. It has a bad prognosis. There is a journal article in Nature on this AMD gene variant Y402H and the anti veg shots. I want medical testing not just 23 and me testing to aide me in the management of this disease. Genetic testing is useful in the management of diseases as well as a predictor of disease.

I'm sorry, but what is your background? Everything you've written contradicts all of the research I've done and every specialist I have seen including The Wilmer Institute at Johns Hopkins University.
There is a genetic factor in my family. My father had this disease but wasn't diagnosed until he was 83 and with technology and research being nowhere close to where it is today there's no telling when his developed. I didn't know anything about it until recently. My dad passed in 2021 at 90. My aunt, his sister, also has it. I'm the 7th of 8 kids and so far the only one with drusen.
I do a whole lot more than just take AREDS2 vitamins. I also eat lots of fresh fruits and vegetables, leafy greens, nuts and seeds (chia, flax, pepita's, sunflower) fresh fish, Omega 3, on a daily basis I eat a mixture of these things. Plus add pure Acai and Aronia berry powder in my fresh fruit smoothies with almond milk that I drink for breakfast. I intermittently fast as well and I get daily exercise. I also take turmeric pills, vitamin c pills and a multivitamin every day. I'm in good health and s good weight. Plus I protect my eyes and skin from the harmful rays of the sun. I'm taking this very seriously. My specialist told me to eat for my eyes as I would for my heart. There is a close correlation.
I have conversations with a lady who works with Brightfocus, one of the research agencies for this disease, and she told me, don't quote me, but she said something along the lines of many people lose their vision because they do not take their diagnosis seriously.
I have met so many people through this support group who have been diagnosed in their 50's and older and their doing just fine. Some have advanced and are getting shots, some have had it for 15 years and haven't advanced. We're all different. I met a lady who told me her dad had wet AMD at 63, that means he must have been in his 50's at onset. He's been getting injections for 18 years and still drives, reads, watches TV, recognizes people. He was an avid golfer, never wore sunglasses, still smokes here and there. I've read so many stories on this support group. When I read stories about someone who was diagnosed with wet or didn't know they had it until they say straight lines wavy, that makes me think they didn't get regular eye check ups.or they didn't take it seriously and blew it off.
This is an "Age" related disease. It's considered young to be diagnosed in your 50s but not unheard of, and it doesn't progress as quickly as it would for someone in their 70s & older it usually worsens as you age (JHU).
I hopeful a better, less invasive treatment will come along before I'm that age, or maybe a cure, or stem cell therapy. As a matter, it's also possible to never progress at all.
All I can do is continue praying and staying positive.
As far as testing, I'm not interested in going that route. I would also think it would have been recommended and it hasn't. I believe I have a good grip on things right now.
I'll be seeing my retina specialist on March 11th, I'll make sure to let him read your message so I can get his feedback on it. I also keep a list of questions that I take to my visits.
We've come a long way with treatments and research even over the past few years. I'm staying positive through this.
Someone told me recently, "This is not a death blind sentence". I believe that.
Had I read your message a few months ago if probably be very upset right now and thinking of ways to take myself out so I never have to live in a world of darkness but I have done a ton of research and I have been seen by excellent retina specialists and believe I have a great team of doctors now. I feel good.
You never mentioned if you have Macular Degeneration or if you're getting genetic testing to if you are a candidate. Do you have it? Which stage? How old are you? And how long have you had it?
I hope to continue this chat. TTYS