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Anyone have intermediate Macular Degeneration

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

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@sjs1

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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Replies to "Since you live near DC you should look for clinical trials. I would move anywhere for..."

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.