📣 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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CommunityMemberbc70a7 Member
I'm living with wet and dry in my left eye and getting injections for both types. So far I'm doing ok
1. Brown Eyed Girl Moderator
 <inline-mention username="CommunityMemberbc70a7" user-id="3124183"/> I'm pleased to hear you're going ok with these injections. What is your schedule like ie how often are you having each one? Wendy, Patient Leader.
CommunityMember95817f Member
I have a much rarer variant of AMD called Vitelliform Dystrophy (AOFVD). And it's even more unusual as the primary location of the lesions are peri- and juxta-papillary, bilaterally, although there is some very slowly developing disease closer to the macula. There has been significant choroidal neovascularization in the papillary areas that have required Avastin injections and - more recently - laser ablations. The symptoms are very similar to both dry and wet form AOFMD: blurriness, very wavy Amsler grid lines, glare, light sensitivity, blind spots, occasional neovascular bleeds, extensive drusen deposits, etc. - but mostly (so farw) confined to peripheral vision. But there are also some symptoms more specific to AOFVD (or completely incidental): loss of color perception, visual migraine, and severe dry eyes (MGD). Are there others on this site who also have this oddball variant? If so, how is it going? Have you found or heard of any treatment specifically for this variant, or even research in this area? And if so, has it helped at all to thwart the progress of the disease? My opthalmologist has me taking the AREDS-2 formulation, although he says there is no research data to show it has any positive effect on this condition. My biannual visits usually include a fluoresceine angiogram and end up with either another Avastin injection or an ablation of a new neovascular growth to prevent bleeds. Restasis also helps significantly with the MGD, but I can no longer use my PC for more than 3 minutes at a time, due to rapid discomfort and blurriness (curiously, my cell phone screen is still tolerable). Night driving is no longer safe and all driving requires frequent breaks due to eye fatigue and the discomfort of dry eyes. 
1. Brown Eyed Girl Moderator
 <inline-mention username="CommunityMember95817f" user-id="8881950"/> thank you for your detailed explanation and question. I would like to acknowledge your comment and I hope that, if one of our members has this similar rare variant, they will reply here. Wendy, Patient Leader.
CommunityMember95817f Member
 <inline-mention username="Brown Eyed Girl" user-id="3141081"/> 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.
Blue Lady Member
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
1. Brown Eyed Girl Moderator
 <inline-mention username="Blue Lady" user-id="8884115"/> I was eating cake on the sofa when I saw your comment. It made me sit up and think. The cake was purely to make me feel happier. It didn't really work - well only for a moment 😀 I do have friends who offer support but my son lives a day (or really two days&#39😉 drive away. If my sight deteriorated significantly I could move to be nearer him, but he is hours from specialist medical facilities, and that's not good as we age. I hope you can continue to ride your bike in a group - maybe you could have well-earned cake at the end of the ride! Warmly, Wendy, Patient Leader.
Blue Lady Member
😃 ha ha you made my day! And we can all use some delicious-ness sometime!😋 Thank you.
1. Brown Eyed Girl Moderator
 <inline-mention username="Blue Lady" user-id="8884115"/> I look forward to hearing that you have found a group to ride your bike with! Wendy, Patient Lelader.