In Ireland today, some 100,000 people are living with age-related macular degeneration (AMD)1. To increase awareness of the leading cause of sight loss in over-50s2, two recently diagnosed patients share their stories about the symptoms and life with wet AMD.
The patients
Mary Rose Stauder, who is in her 60s, enjoys an active, independent life. Originally from the United States, Mary Rose has lived in Ireland with her husband for more than 30 years; they have one daughter. She enjoys reading current affairs and is a member of a local poker group. She was diagnosed with wet AMD in March 2021.
Máire Curtin recently celebrated her 90th birthday. She is an avid reader of both books and newspapers and enjoys sowing tapestries. She lives in Dublin with her husband and has four children and seven grandchildren. She was diagnosed with wet AMD in May 2021.
Symptoms and diagnosis
Both Máire and Mary Rose have diligently paid attention to their eye health, getting their eyes tested annually. Despite this, they both experienced symptoms of wet AMD between their annual check-ups. Wet AMD is a more severe form of AMD characterised by abnormal blood vessel growth that produces fluid in the retina3. The appearance of symptoms between annual eye tests demonstrates just how quickly wet AMD can develop.
Máire describes the symptoms. “For weeks beforehand my left eye was bothering me. I thought that I just had something in it. I just noticed that one eye was quite blurred and it was showing up in my general vision. And it was bothering me and I noticed it when I was reading in particular.”
She was swift to act and was diagnosed with wet AMD.
My sight is definitely affected; there is no doubt about that. I'm just about managing
Because she was at higher risk of AMD, Mary Rose tested her eyesight using an Amsler Grid throughout the year. An Amsler Grid “just looks like a piece of graph paper. In fact that’s all it is. Sometimes it’s black with white lines, and sometimes white with black lines. It’s just so easy to use it. You just close one eye to test it. And if the lines are wavy, that’s not great.”
“I took out the Amsler Grid a couple weeks after my check-up and noticed that there was a waviness in the lines in my left eye, and so I called the very next morning and I was in the very next day and they did the full battery of tests again.”
Her vigilance paid dividends – she was diagnosed with wet AMD.
Impact of wet AMD
Because of her early diagnosis, wet AMD has had little impact on Mary Roses’ life. She describes her relief that it was caught early as “immeasurable” and feels she “dodged a bullet”.
Máire outlines the consequences of wet AMD on her life:
“My sight is definitely affected; there is no doubt about that. I’m just about managing. I’m not reading as well. I can’t see things clearly. I can’t see the distance. There is an independence that goes with your life, which I had up to this. I don’t have that independence now to anything like the same extent. I can’t go out and meet my friends at the moment. If they collect me, I go out with them but my use of the car is practically gone. To go out and do the shopping, I can’t do it in the car. Somebody has to do it.
I still read but not at the ease at which I did, and I feel that my speed in reading has slowed down
“It has stabilised and that’s the main thing because it would just continue on apparently if I hadn’t done anything about it.”
Reading
As a keen reader, Máire reflects on how wet AMD has impacted her favourite pastime.
“Oh, considerably. The light that I’m reading with, let’s say a table lamp, that light on the page can just affect the way it is. The letters, definitely there is an affect. The print appears small in the paper and it appears pale to me at the moment in a lot of articles.
“I still read but not at the ease at which I did, and I feel that my speed in reading has slowed down because it takes me longer to see the words.”
Reading still plays “a huge role” in Máire’s life. She reads the Irish Times every morning “more or less from cover to cover”. Reflecting on what life would be like if she was diagnosed later and lost the ability to read, she says that “it would have a huge impact on my life. It would be a major upset. The fact that I wouldn’t be able to read; it would be major. I mean, I couldn’t describe to you the difficulties that I’d have.
“It has always been part of my life. It is my one luxury at the moment – that I can buy books and read them. I miss the ease of reading the paper that I had. Because we are retired it is easier for me to take the time and read it slower but it would be a huge loss to me, it really would, particularly for reading.”
Mary Rose is also a passionate reader. She reads The Irish Times and the New York Times daily to keep up to date with current affairs. She dreads to think what life would have like if she was diagnosed later and had difficulty reading.
If I was depending on other people, it would really be very isolating
“I can’t even imagine it,” she says. “It’s so much a part of me when I wake up in the morning. I just can’t imagine how isolating it would make me feel. There’s something about being able to read, and being able to go back over that paragraph and go, wait a minute, what are they saying there? It’s vital to feeling a part of things.
“Even having conversations, even with my husband for example, we have different interests. And we bring different things to the conversation every day [based on what we read], even though we have been living together and married for over 30 years. If I couldn’t contribute to that in any meaningful way, if was depending on other people, it would really be very isolating.
“So, it’s very important. I can’t even imagine it. I don’t want to.”
More information
As part of AMD Awareness Week, September 20th-26th, which was supported by Novartis Ireland, www.amd.ie was relaunched with new content to increase awareness of the symptoms of AMD and provide helpful resources to the public. It contains a unique AMD Symptom Checker plus free booklets to download.
This article is supported by Novartis Ireland. These patients have been paid for their contribution.
Oct 2021 | IE161251 POP20212030
1. Akuffo KO, Nolan J, Stack J, Moran R, Feeney J, Kenny RA, Peto T, Dooley C, O’Halloran AM, Cronin H, and Beatty S. Prevalence of age-related macular degeneration in the Republic of Ireland. British Journal of Ophthalmology. 2015.
2. The Cost of Sight Loss Report NCBI 2011.
3. Schmidt-Erfurth U, et al. Guidelines for the management of neovascular age-related macular degeneration by the European Society of Retina Specialists (EURETINA). Br J Ophthalmol. 2014; 98:1144-1167.