Seeking Forum for AMD Age-Related Macular Degeneration

JimInMaineMember

Hi all -- I've had my pouch 10+ years and all seems good in that regard.

But, I was diagnosed with Wet Age-Related Macular Degeneration (AMD) in my right (non-dominant) eye1.5 years ago.

I've been trying to find the AMD equivalent of the J-Pouch Group — ie. an active forum where all aspects of the disease are discussed. I've found forums but they're not very active and most often linked to a particular product used in treatment.

Apologies if some feel I'm breaking the rules by asking an ophthalmic question here but the J-Pouch Group has been my medical go-to for so long that coming here seems very natural to me.

So, does anyone know where all the AMD people hang out and exchange information? I've been getting injections of Lucentis in my right eye with positive results. I've now been diagnosed with WAMD in my left eye as well and so am now having injections in both eyes.

Jim in Maine

2/26/1512:15 PM

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Jan DollarModerator, RN, retired

I posted a reply to your other post. This was the best link I could find:

http://www.mdsupport.org/support/

Jan

2/26/1512:31 PM

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JimInMaineMember

Hi again Jan —

I'm replying to you here as well as you had the grace to reply to me in both threads.

I have signed up for the mail-list at the MD Support website which is purportedly the "venue" for the most active group discussion. Though, so far, my impression is that the site and/or its mail-list are not nearly as active and dynamic as is the j-pouch.

The MD Support site does contain a lot of information and good links so will be a very good resource. I'll try to remember to come back here and report on my experience ina few months.

Jim

2/27/158:20 AM

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Jan DollarModerator, RN, retired

Jim, I hope you get some useful info. For something as common as AMD, you'd think there would be loads of discussions boards out there. I suspect that since treatment is limited, there is not too much to discuss.

I did find this one, but you probably already ran across it:

http://www.visionaware.org/for...neration-community/1

Jan

2/27/1511:12 PM