"It took just three days to leave me in horrific pain and blind in one eye"

Post date: 
Friday, 20 March 2015

Irenie Ekkeshis talks about her successful "no water warning" campaign to help raise awareness of a disease that can affect people who wear contact lenses.

It is most often transmitted to the eye through water exposure; when wearers rinse or store their contact lenses in tap water, or when they swim or shower while wearing lenses. AK takes hold with alarming speed. It is excruciatingly painful and causes unbearable photophobia and terrifying vision loss. When it happened to me, it took just three days to leave me in horrific pain and blind in one eye. 
I started the “no water” campaign because I felt it was unfair that the optical industry at large tended towards a narrative of blame when it came to AK. Victims tended to be labelled as unhygienic, uncompliant wearers who were ignoring widespread advice on safe contact lens wear – irresponsibly playing Russian roulette with their eyesight. 
The more I researched whether this was true, the more I realised that it certainly wasn’t. Studies show that awareness of the risks of water exposure to contact lenses is universally low. Safety information or education on these risks is limited, especially in comparison to marketing messages, which position lenses as low risk throwaway lifestyle products, as safe to use as mascara or toothpaste. 

Understanding the risks

Non-compliant wearers are not just “irresponsible”. They actually do not understand the risks and impacts of water exposure to contact lenses. This has to change. 
That is why I started campaigning for the inclusion of a “no water” graphic warning to be included on contact lens packaging, much like warnings on cigarette packs, and for greater awareness and education of contact lens safety messages among users. 
I am determined to help reduce the number of individuals who have to endure the life-altering illness that I had to go through these past four years, which has left me completely blind in one eye. 
Response to the campaign has been broadly positive. I have a coalition of supporters, including the British Contact Lens Association (BCLA), the American Academy of Optometry, and the Food and Drug Administration in the USA. My “no water” graphic is now printed on stickers produced by the BCLA, which are being used on contact lens packaging by many UK opticians, and these are soon to be adopted and rolled out in the USA. 

Crucial research

Fight for Sight has provided much-needed support to the campaign and funded crucial research to improve the diagnosis and treatment of AK in future. We also have a wonderful group of fellow patients who have supported the campaign and started to lobby for education and awareness of lens safety in their own communities.
But there is more work to do – the use of the stickers is a good start, but the message is still not reaching enough lens wearers. Ultimately, I want to see the “no water” graphic printed directly on contact lens packs, and instructions for safe use to be given to all wearers across the world every single time they purchase lenses. 
I take heart however from the fact that this disease – previously thought to be so rare it wasn’t worth discussing – is now firmly on the agenda of the optical community. The “no water” campaign is gaining traction and support, and is starting to create a change in both attitudes and behaviours. 

Winning the SMK Health Campaigner of the Year Award is a tremendous honour. It has been a wonderful recognition for my efforts thus far and has given me a fantastic boost to carry on this work.

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