“It was a tremendous psychological shock”: the emotional impact of dry AMD
Patients share their stories, from pretending to see constellations during a family stargazing trip to narrowly avoiding a bus hidden in the fog
The research, which was published in Eye, involved interviews with 27 participants at different stages of dry AMD progression.
The participants described the impact of the disease on their lives, with the lack of treatment options forming a common theme.
A patient recalled being told “You’ve got dry macular degeneration, end of story” during their diagnosis.
“So I said to him, what do you mean ‘end of story’? He said well that’s it, there’s nothing we can do, there’s no cure for it,” the patient recounted.
Patients also highlighted the challenges they faced in their daily lives as a result of the disease, from struggling to read labels to being wary of uneven paths.
One patient described nearly being run over by a double-decker bus.
“It was foggy and the bus was painted pale blue and white and although I was looking towards it I did not see it,” they shared.
Another participant recalled a family stargazing trip close to Ashdown Forest where there is no ambient light.
“They say, oh look, there’s such and such a constellation, there’s another one. I’m saying, oh yes, oh yes, but I can’t really see it,” the patient said.
Study participants also described coming to terms with their diagnosis.
“It was a tremendous psychological shock. I used to write stuff about how I felt, I felt very devastated by it and then gradually you realise it’s not happening immediately and you can go on doing everything normally,” the patient said.
Professor David Crabb, from City, University of London, highlighted that many people diagnosed with dry AMD fear going blind and suffer anxiety, exacerbated by the current lack of treatment for the condition.
“Much of this distress might be allayed through more supportive conversations with their eye health professionals and receiving timely information about the disease and outcomes, and referral to any further necessary support,” he said.
The study recommends standardising the rehabilitation pathways across the eye care sector, which could include referral to eye clinic liaison officers to discuss information about dry AMD and referral to other relevant support services.
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