Date: 28 September 2017
An Oxfordshire woman who began to lose some of her vision aged 35 has urged people with healthy eyes to help researchers understand the link between eyesight and sleep.
Lori Riley, who suffers disturbed sleep, is helping University of Oxford researchers understand better the link between vision loss and how it affects their sleep.
The 66-year-old, from Chipping Norton, was diagnosed with macular degeneration (MD) aged 35, a condition associated with significant problems such as recognising faces, reading and driving.
After further testing Mrs Riley’s diagnosis was confirmed to be a type of degeneration where the tissues at the centre of the retina, located at the back of the eye, are affected.
A complication of this condition is that small fragile blood vessels develop and these can leak blood or fluid, which accumulates under the retina, and requires urgent treatment.
Symptoms of this complication include distortion of images, where straight lines appear curved or appear to have a bump in the middle.
The study is looking at whether different eye conditions have an impact on sleep patterns and is being run from the Oxford Eye Hospital at the John Radcliffe Hospital (JR),
Depending on whether it is day or night, different amounts of light pass into the eye to a receptor which communicates with the brain to fine tune sleep patterns so we sleep at night and are awake during the day.
Previous studies have shown eye diseases have an impact on a person’s sleep. The latest study is to assess the impact of different eye conditions such as glaucoma, optic nerve conditions and other inherited retinal conditions.
Researchers are looking for people with healthy sleep and vision to take part in the study so they can be compared to those with vision loss.
Mrs Riley said of her sleep patterns: “It can vary, sometimes I have a week of not sleeping very long. I don’t like sleeping in, it puts the day out of sync and you get a different type of sleep. It makes you sluggish and you are always tired and you get niggly.
“I don’t sleep for long periods, I can go on very little sleep which probably does affect me in the long run. It takes me a long time to go off, I have tried reading and watching TV.”
Mrs Riley began experiencing vision problems in her early 20s: “I have only ever needed glasses for reading, I had incredibly good, long sight vision, I could see the number of a bus from miles away.”
Mrs Riley said: “It is worse than not seeing, you see but it is wavy, it is a bit ripply, like throwing a pebble into water, it is really strange.
“If my husband leaves me in a supermarket I have to see what he is wearing because I can’t distinguish faces, you can’t recognise people until they are close up.”
She said: “The awful thing is, my good eye could go at any time. If it goes, wherever I am, I have a certain amount of time to get to the JR so they can put in something to stop the leak.
“If I don’t get it in time then it could go the same way as the other eye.”
Those taking part in the study are asked to complete questionnaires about their sleep and general health.
If they are found to have sleep disturbance they may be asked to fill out a sleep diary and provide urine samples over three weeks.
This group may also be asked to wear a small watch that senses movement and light and the further option to give a blood or mouth swab for genetic testing.
It is hoped that by understanding the different impacts of these conditions on sleep patterns, eventually we will be able to provide better care and support for patients with these problems.
Mrs Riley said: “When you attend a hospital for a long period of time and they are trying to do research, things that benefit other people, and if you have time, then I don’t see any reason why you shouldn’t do it.”
Oxford Eye Hospital’s Professor Susan Downes, who is leading the trial, said: “I hope that as many people as possible, without any health or eye problems, can do our questionnaires about their sleep patterns as it really helps us with our research to also have people who don’t have eye problems so we can compare their sleep patterns to those who with ocular problems like Mrs Riley.
“We are particularly looking for adults aged 60 years and older, but do need all ages to participate if they can.
“We are about to start a trial in patients who have sleep disruption thought to be due to their eye disease, and so this kind of information is really important. The team are very grateful to anyone who feels that they can be part of this.”
For information on how to take part call 01865 231096 or email Sophie.firstname.lastname@example.org or visit www.ouh.nhs.uk/research/patients/trials/circadian.aspx