Irenie Ekkeshis, patient

Irenie Ekkeshis@NHS from 20/03/17 to 24/03/17

Twitter Handle: @reenwilson

Condition: Patient Leader, with lived experience of corneal disease

Place of treatment: Moorfields Eye Hospital NHS Foundation Trust

Six years ago, my life changed completely in a weekend. I put my contact lenses in as normal one Saturday, and three days later I was in terrible pain and couldn’t see out of my right eye.

Since then I’ve had to have intensive treatment for Acanthamoeba Keratitis, the contact lens-related infection that I caught as a result. I’ve had two corneal transplants which both unfortunately failed, and now I’m blind in my right eye. As a result of what happened to me, I started a campaign to raise awareness of the biggest risk factor for my disease- water exposure whilst wearing contact lenses.

It’s quite remarkable that one in three contact lens wearers are not aware that swimming or showering in contact lenses can lead to serious infections like this one, which can cost people their sight.

I managed to persuade the British Contact Lens Association to include my ‘no water’ logo on stickers designed to be used on the front of contact lens boxes, reminding wearers not to expose their lenses to water every time they reach for a new box.

Since then, the no water stickers have also been introduced in the USA and Australia, and it’s wonderful to see my message spread. In 2015 I was awarded the SMK Health and Social Care Campaigner of the Year for this work, and In 2016 I won Campaign of the Year at the RNIB Vision Pioneer Awards.

Through my work to develop a support group for AK Patients, I was also recognised as one of 50 HSJ Patient Leaders making impact in the NHS. I’m a passionate advocate of patient involvement and participation, and I’ve seen first hand the impact it can have.

I live in London, and am passionate about food, film, culture and family.