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Geographic Atrophy: Introduce Yourself!

Have you been diagnosed with geographic atrophy?

What is geographic atrophy?:

- When were you diagnosed?
- How have you managed the condition?
- Have you spoken to your doctor about Syfovre?
- Any words of advice for those diagnosed with GA?

Share with our community!

  1. Fifteen yesrs ago or thereabouts, my optometrist noticed what he correctly assumed was MD and recommended a retina specialist for a complete evaluation. He confirmed that I did indeed have MD, prescribed Areds2 vitamins, regular use of the Amsler Grid and a 6 month follow up appointment. I received no literature, explanation, etc. For some ridiculous reason I thought it was no big deal even though my father and sisters had the condition. This continued for a number of years, with the same questions and assurance that there was no change.He seemed too nonchalant and I began to doubt him so I switched to a specialist whose practice was involved in research. I guess she thought I had done my homework about my condition. No one had ever mentioned wet, dry or GA to me. Then things began to change. Fence, lamp and light posts were curvy with chunks missing. Stripes on the highway were snakelike, yet the lines on the Amsler grid remained straight. I reported to my specialist but she didn’t offer an explanation. On an annual visit to my (new) optometrist, I asked him what type of MD I had and his immediate response was GA, taking time to point out the drusens on the pictures in my left eye sent to him by my RS. I’m an educated person but it took me some time before I began reading up on my condition for which there was no treatment. In the meantime, i had laser cataract surgery on both eyes and was fitedd gir glasses thus improving my vision. I read every thing i could about the soon to be approved injections for GA. I also had meaningful discussions with my RS; her attitude seemed to change then and when approval came forth, I did not hesitate to receive treatment. Given every two months in my good right eye, it is our hope it delays the progression. Presently I see well and can do everything I have always done except read books and magazines. However with a back lit Kindle, phone, ipad, I can read anything. Sometimes I need a magnifying glass to read labels, but otherwise, I’m good. I am 74 years old and perhaps in my lifetime, better treatment or even a cure will be found. I can only hope and that’s exactly what I intend to do.

    1. are you aware if Syforve or Izervay are availiable in Europe? Thank you

    2. this is the latest information I could find. Regards, Sharon Moore patient leader

  2. I was diagnosed with Geographic Atrophy about a year ago. I sought a second opinion mainly because I also had cataracts. My new RS said I was still at the intermediate stage of the dry form. Both of these Retinal Specialists mentioned Syfovre injections for the advanced stage of dry macular degeneration. They both also said they would not use it on any patients at the moment because of its reported adverse side effects. Since then, the newer injection for advanced dry amd has just become available - Izervay. I will ask about that at my next appointment. Wendy, Patient Leader.

    1. has your retinal specialist mentioned Izervay? It is the second medication approved for GA. This link provides the latest results from the clinical trials. I hope to start treatment with it soon. Regards, Sharon Moore patient leader

    2. are you aware if Syforve or Izervay are available in Europe? Thank you.

  3. Hi, I have had dry AMD about 7 years ago and it progressed slowly but last year I couldn't deny that I couldn’t see much without lots of light. About 6 months ago I was diagnosed with GA. My older sister had AMD and suggested using LED lights everywhere. It certainly helps and adding lights in closets and over the kitchen sink help. We now live in an apartment (I am 74 and my husband is 79) so things are a bit simpler. I do have trouble seeing things in the outside world like in stores and at Church. There isn’t much I can do about that except carry a small flashlight (which I do). I am very interested in how other’s cope. Thank you for this wonderful source of information.

    1. thanks for sharing with us. I have LED lights over my kitchen bench too, and torches in every room. Cupboards and wardrobes are difficult. I use Alexa to turn on floor and hall lamps to save me bending down to each switch and I just tell her "goodnight" when I go to bed, and she turns everything off. She plays my music and radio too. I find her a great help 😃. Wendy, Patient Leader.

  4. I have not seen this thread for those with GA, though I have been on this site for a couple of years. Thanks to those who have shared their story. My RS started giving his patients Syfovre but stopped when there appeared to be some adverse reactions in the broader GA community. I have had GA about 5 yrs, but it's only been in the last 12 months that I've had significant activity altering changes. I have a 20" computer monitor and even with that, the blank spots in my vision make reading slow. You seem to automatically learn to move your head to accommodate those spots. I use a 'zoomed in' view on most web pages. It's tiring and frustrating not to be able to read without some aid.

    Last night, 5 family members came over to wish me a happy birthday...two of them masked to prevent their respiratory illness from traveling. They didn't come to stay, just deliver their birthday cheer. Two of the teens had written quite long good wishes and I took time and pretended to read them and gave lots of hugs in response. Of course, I couldn't see the notes but didn't want them to know, and I read them later to find what was really said.

    Driving is becoming more of a problem and I will be driving less when it's snowy. I actually drive very little now, and it's rather confining. We are waiting to get into a senior living community where transportation is available. How neat is that! New magnifiers are needed now as the original ones no longer do the trick. The kitchen chores really haven't been impacted...I really enjoy cooking. I also enjoy doing artwork regularly and that is a challenge, but large lighted magnifying lights can be swung into position over my easel...along with a headlamp. All in all, I've see more decline in a shorter time than I have experienced in the past. If my doctor offers the injections, (I see him every 12 weeks) I will most likely take them though I do have this fear about the actual needle in the eye🙁 When I mentioned that at my last visit, he said that patients really get used to it after the first couple of times. If someone has already been given the shots, I'd like to hear about the experience (I think).

    1. Thanks, Sharon😀 Yes, reading and driving definitely #1 disadvantages. I heard from a friend who was just diagnosed with AMD and who will be seeing a RS for the first time in Jan. She is 80. I wonder if there's any difference in progression for those who develop the disease in their 60s vs those who are first diagnosed when in their 70s or 80s. Have you read anything about that?

    2. I haven’t read anything specific to age of diagnosis. Many people go undiagnosed until a later age. Logically speaking it seems if diagnosed at a younger age you would have years of progression. My retinal specialist reminds me that everyone is progressing though some do so faster than others. Sharon Moore patient leader

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