📣 Share Your Experience: Be Part of Our 5-Part Poll Series! 📊

By MacularDegeneration.net

1 min read

What is living with macular degeneration really like? Participate in our 5-part poll series to share your experiences and hear from others in the community. Your insights will help voice the realities of everyday life with macular degeneration.

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sho50Member
@Brown Eyed Girl Thanks!
sho50Member
@Brown Eyed Girl Thanks Wendy, Well, I guess they call this a "rare" variant for a reason! So far, no one else on this site has chimed in or commented about having or treating a similar diagnosis. My ophthalmologist has stated that he is basically working blind (pun intended) on my case, as he has very little research information to go on. He treats it as a case of both wet and dry AOFMD: treating occasional bleeds with Avastin (which works well) and laser ablations of neovascular tangles. I also take the Preservision AREDS-2 formulation twice daily plus additional Lutein and Zeaxanthin, per his prescription, Restasis three times daily and daily hydrochlorous acid eye washes for the dry eyes (MGD), and wear "blue blocker" tinted trifocal Transition sunglasses at all times (plus extra "blue blocker" over-glasses when driving). My ophthalmologist thinks my condition is relatively stable, as of my last two visits. So, at the moment, this is apparently all that can be done... unless someone knows of something else available or in the research pipeline.
Blue LadyMember
😃 ha ha you made my day! And we can all use some delicious-ness sometime!😋 Thank you.
Blue LadyMember
I have mCNV, myopic Choroidalneovascularization in my left eye it is in the central vision and some left side peripheral vision. I am basically blind in my left eye with the wavy lines and some loss of color etc. I am so afraid of this happening to my rt. eye. It happened suddenly no sign that this could happen to me. This is a rare condition also according to my research ing on this condition, it is most common in East Asian people, (5%) I am French Canadian. Computers and reading is difficult and tiring and can aggravate my condition, I no longer make jewelry. Because of visual distortion and perception I am not confident in riding my ebike alone. (I think I can ride in a group however). This is not just vision, this is life. I don't think laying about and eating cake can make up for this. I hope I can find a way to go on and live and live well. I am 73yrs old and I have no support /family to help me. I hope you have someone who can help you through this
CommunityMember95817fMember
 @Brown Eyed Girl Thank you. This fixes the blank reply link I received earlier. I should add that my AOFVD totally stumped my regular opthalmologist who had never seen the odd, yellowish retinal remains after iridescent pigment loss (she is a "front end" cataract specialist). But I was referred to a retinal specialist (Dr Amador Subong) who immediately identified this rare but known genetic variant. The iridescent retinal pigment apparently is highly protective and explains my acute sensitivity to bright lights and the loss of accurate color perception especially in low light. I am fortunate that this first attacks mainly peripheral vision in the early and moderate stages, because my central (and most important) vision has - so far - been spared the worst degeneration. The growing blind areas around the optic nerve (papillary blind spots) are much less intrusive to daily life than central (macular) vision blindness. No specific treatments are known for AOFVD (nor, apparently, even being researched) other than the injections and ablations for leaking neovascularizations that are in common with wet-form AOFMD. And, of course, my extensive stippled, very hard drusen are in common with dry-form AOFMD; there is no treatment for these acuity-robbing deposits.