Inherited Dry Macular Degeneration

By CommunityMember70e8ab

1 min read

My grandmother became blind, as did my mother. I was diagnosed last year but told that I was still ok to drive, which put me in a panic because we live in a very rural area with no public transport, and my husband has dementia.

Feeling some sense of hope

Having read the stories on this site, I feel more confident about my upcoming eye test as it seems that we are still able to drive for some years after diagnosis. I am not finding it so easy now to pick up any reading matter as I have to work harder to read it through my varifocals. My reading glasses are fine.

Reading with macular degeneration

I look at straight lines which sometimes have a little wiggle in them, which then disappears. I still do the treasury books for a charity, but have to double check sometimes when I have a discrepancy, which is usually because I have misread a number.

I am hoping to be able to do the books for another year, when I shall be 81.

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Brown Eyed Girl Moderator
@Community.member70e8ab I'm still driving more than 10 years after diagnosis, so there is hope for you in that regard. I asked my specialist what visual accuity was necessary to pass the license test, so that I would have some warning if my sight was getting worse. It depends on more than just visual accuity though. Things such as peripheral vision are important too. My mother was also legally blind, but there are some treatments available now to slow down progression if we get to the advanced dry stage. Best wishes, Wendy, Patient Leader.
Linda Hoopes Moderator
I find your comments inspiring and positive - Thank you! My mother was also blind from dry AMD. In so many ways, we have much more going for us with the research, testing and knowledge they did not have. I, too, continue to drive and it’s been over 12 years since my diagnosis when I was 65 y/o so often, the dry AMD can be a slower progression. Wishing you well and hope you will stay in touch to let us know how you’re doing! Hugs💟Linda Hoopes, Team Member
CommunityMember70e8ab Member
There has been mention of treatment for dry MD and I remember reading that something had been approved in the US. Is there any treatment offered in the UK? I have an appointment with my GP next month to find out if there is anything more that I can do other than taking Macushield daily, so any upfront advice would be appreciated. Thank you for this forum, it's quite comforting ☺️ 
1. Brown Eyed Girl Moderator
 <inline-mention username="CommunityMember70e8ab" user-id="4769849"/> You might have heard about the new injection treatments for the advanced form of dry macular degeneration called geographic atrophy. These injections are called Syfovre and Izervay. Many community members are having one of these. They are designed to slow down progression and are not a cure. Do you have early stage of macular degeneration and newly diagnosed? Wendy, Patient Leader. 
2. Brown Eyed Girl Moderator
 <inline-mention username="CommunityMember70e8ab" user-id="4769849"/> I've checked for you, and those treatments for advanced dry macular degeneration aren't yet available in the UK. Are you seeing a retina specialist as well as a GP at this point? Wendy, Patient Leader.
CommunityMember70e8ab Member
Hi Wendy. No I'm not, which is why I'm seeing the doctor. At the moment I have just been diagnosed by the high St opticians. Is it usual to be under the care of a specialist?
1. Brown Eyed Girl Moderator
 <inline-mention username="CommunityMember70e8ab" user-id="4769849"/> I saw an optometrist for the first few years as I knew there was nothing much I could do besides take the AREDS2 supplements and try to eat a Mediterranean-style diet, and check my vision between appointments using an Amsler Grid. I transitioned to an ophthalmologist when I developed amd in my other eye and then I went to a retina specialist. I was glad I had established myself with him because within a year of seeing him one eye developed the wet form and I had an injection on the day of diagnosis. I have found that optometrists don't always have equipment of the same standard as specialists and they obviously don't have the same training. Wendy, Patient Leader.