Campaigning to stop blindness from contact lenses

Post date: 
Thursday, 12 April 2018
Irenie Ekkishis, campaigner, smiling

In 2011, Irenie Ekkishis lost her sight after contracting a rare waterborne infection via her contact lenses. Like most contact lens wearers, she knew nothing of the risk water exposure with her lenses could have on her vision. Since then, Irenie has been running a campaign called No Water to change contact lens packaging to help warn others of the danger.

 
“My name is Irenie. One Saturday morning in 2011, I woke up with a sore eye. It was streaming quite a lot and I was having shooting and stabbing pains. I went to the pharmacy for some drops as I thought I’d just got a little bacterial infection. But by that evening, I was so sensitive to light I couldn’t go into our bright kitchen.”
 
Irenie went to Moorfields Eye Hospital the next day and was diagnosed with a rare contact lens-related infection called acanthamoeba keratitis (AK). Within four days, she had permanent sight loss in her right eye.
 
Irenie said: “I’d always been an active member of society. I loved my job, I’d just got married and moved house. But after this happened to me, I was on a regime of hourly eye drops and I really couldn’t concentrate on much else, not least go back to work.
 
“It was then that I found out AK is entirely preventable if you avoid the risk factors.
 
“The shock of losing my eyesight so quickly hit me hard and I just thought I had to do something to try and stop this from happening to other people.”
 

Why campaign for “No Water”?

While researching AK, Irenie learned that most information online about the infection said that it was a result of patients’ “poor hygiene”. She understood “poor hygiene” to mean habits like storing lenses in glasses of water or licking them before wearing again. But actually, Irenie read that poor hygiene in this context also included activities like swimming and showering while wearing lenses. She felt that most lens wearers wouldn’t be aware that water exposure would also be classed as “poor hygiene”. And many would be putting themselves at risk of this sight-threatening infection without knowing they were doing so.

 

“What I wanted to achieve with the campaign was essentially to raise awareness of the risk of water exposure while wearing lenses and to encourage the industry to be more vocal about this specific risk. It can have devastating consequences, but isn’t really talked about,” said Irenie.

Over the course of a few weeks, Irenie started her campaign by teaching herself how to use Twitter from her sofa. She tweeted the British Contact Lens Association, the Association of Contact Lens Manufacturers and contact lens manufacturers asking whether they would support a “no water” warning being put on contact lens packaging.
 
“Initially I was ignored,” Irenie explained, “but over time, and with persistence, I started to get responses. I noticed that every time I got a response, the door opened a little bit wider and I could take the conversation a little bit further.”
 

Campaign success

“With the campaign, I managed to persuade the British Contact Lens Association to print stickers to go on the front of contact lens packaging, featuring a logo that I had designed. It is a very simple graphic, with a line through a tap, to denote the idea of ‘no water’ with lenses.
 
The American Academy of Optometry then did the same thing, and recently we heard that the Cornea and Contact Lens Society of Australia are also going to be using the stickers, which is great news.”
 

What more is there to do?

In 2016, Irenie’s work was recognised at RNIB’s Vision Pioneer Awards where she won the Campaigner of the Year award. She was also able to raise the profile of the No Water campaign message to a wider audience when she ran the NHS’ Twitter account last year. The initiative showcased patient stories – with a different individual taking over the account every week.
 
Irenie’s No Water campaign has evolved from one simple message, to focus on other important areas, including how contact lenses are sold and marketed to consumers.
 
“Contact lens packaging and advertising often features imagery to do with water. I’ve now added another strain to the campaign to convince manufacturers to remove references to water in their marketing materials,” Irenie said.
 

“It’ll take time but I’m motivated to see it through. I’ve got a massive network of support of friends, family and other patients, as well as support from charities like RNIB, Fight for Sight, and Moorfields Eye Hospital. We need to see these important changes happen that will help contact lens wears be safe in the future.”

This article originally appeared in the Spring 2018 edition of Connect Magazine.
 

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