The illness changed my life literally overnight; from being a healthy, energetic individual, into someone who was absolutely consumed by illness. With weekly hospital visits, endless medication and severe symptoms including pain and photophobia, within six months of being diagnosed, I had lost my job, my social life and confidence.
I read wildly inaccurate reports of Acanthamoeba spreading from the eye into the brain and causing death (this isn’t true). I read that most people who get AK need a cornea transplant (this isn’t true either). I read that there is no consistent treatment standard for AK across the world, and that very little data exists on the efficacy of one treatment over another (this is true). Naturally I was frightened half to death by this.
But things changed for me when I was invited to participate in a study being undertaken at Moorfields, looking at risk factors for AK. I remember having to give a DNA sample as well as to collect water samples from my house. I remember how excited I was to send the samples to the lab.
For the first time in a long time, I felt somehow I was regaining some sense of control over what was happening to me - actually for all of us affected by AK. I was helping change the course of the way this awful disease might be diagnosed and treated in future.
This was an incredible initiative - standing side by side with doctors – feeling like I had a valid point of view, able to enrich that conversation through my own experiences.
Since then, I’ve worked closely with cornea researcher Dr Nicole Carnt, to think about what questions research can answer about AK. Together, we’ve even started developing new proposals for studies which help understand its treatment, diagnosis, and crucially – for prevention.
SMK Health Campaigner of the Year and @HSJNews Patient Leader
Note about this blog (by @ClaireGibbsUK):
I met Irenie at the House of Commons after we were both invited to attend an All Party Parliamentary Group on Medical Research (with thanks for @amrc). I was absolutely inspired by Irenie's story and the support which the Fight for Sight team give to research and helping patients be involved in their care and treatment. Irenie is the reason why so many of us do research and her story gave me goose bumps. #WhyWeDoResearch seeks to help give people a voice to say why they do what they do therefore I was delighted that Irenie agreed to share her story as a blog and am extremely humbled to be able to promote this alongside the campaign.