Charlotte Clarkson

Please help me fund more research into Acanthamoeba Keratitis (AK)

Fundraising for Fight for Sight
raised of £2,000 target
by 130 supporters
Event: Virtual Edinburgh Marathon Festival 10K 2021, on 29 May 2021
The AK Community
Campaign by Fight for Sight (RCN 1111438)
The AK community is a dedicated fund, fighting for better diagnosis, treatment and prevention of Acanthamoeba Keratitis.


When I was 23, I permanently lost the sight in my right eye as a result of the water-borne parasite, Acanthamoeba.  

Acanthamoeba Keratitis (AK) is a rare but serious infection of the eye, caused by microscopic organisms called Acanthamoeba, which are common in nature – in lakes, swimming pools, hot tubs as well as domestic tap water, soil and air. AK is most common in people who wear contact lenses, but anyone with an injury to their cornea, the clear window in the front of the eye, is susceptible to developing this infection.

Unfortunately, there is such little awareness of the risks water can have for contact lens wearers or anyone with an eye injury; amongst physicians and members of the public. So many people I have spoken to recently have been shocked and completely unaware of the dangers of mixing water with their lenses, and many tell me that they wear their contacts when they shower or go swimming. (If you are one of these people, please, please stop!) 

In July 2018, I was on a gap year in Canada when something flew in my eye and scratched my cornea. Some water must have been trapped in my eye and as a result of that, and a combination of continuing to wear my lenses, the parasite was able to penetrate my cornea.  My symptoms started the following day – a scratchy feeling, similar to having grit in my eye. Over the following days my eye became more irritated and red. I saw a GP who advised over-the-counter antibiotic eye drops for what he assumed was a stye. Within a couple of days my eye was much worse  and I was referred as an emergency to an ophthalmologist. 

For 2 months, I was misdiagnosed with HSV Keratitis, a cold sore of the eye. None of the medication I was given was making any difference to my pain or symptoms. Eventually, the 4th specialist I saw suggested I may have contracted AK. The doctor took a scraping of my eye (yes, it was just as awful as it sounds!) to try to confirm. However, this test came back negative. AK is very difficult to detect and this has severe consequences for patients as it is prudent that aggressive treatment starts ASAP

Despite the negative result I was started on treatment immediately as a precaution. As there is currently no universally agreed treatment for AK my doctor was researching articles online to try and follow which drugs other physicians had recommended. This involved administering toxic eye drops to my eye hourly, (all day and night) for 11 days. They were almost as painful as the condition itself and caused my eye to become even more aggravated and bloodshot.  

I did have some improvement, however, in North America (and in many other parts of the world) the medication is extremely hard to come by and is typically not covered by medical insurance. My doctor told me that as he had no experience of treating the condition and there were more reported cases of it in the UK, he recommended I fly home to Scotland. It was an absolutely devastating time for me and I still had no idea if AK was the correct diagnosis. 

I had an emergency consult with a corneal specialist when I arrived back in Edinburgh in October 2018, but even he couldn't determine exactly what was causing the damage to my eye. He took another scraping of my eye which was also negative. He decided to play cautious and kept me on AK medication but at a reduced rate, which meant that I was finally able to sleep through the night again. 

Over the next 6 weeks I made a number of emergency visits to my doctor when my symptoms would suddenly flare up and cause me major pain. On one occasion I was told there was a scratch on my eye, presumably from the wind the day before(!!) And yet, we still had no answers.  I had tentatively gone back to work part-time in an effort to get back to normal life but the constant emergency hospital visits weren't helping. One morning in December I woke up to discover I was blind in my right eye. My specialist took another scraping and admitted me to the hospital immediately whilst nurses administered the awful eye drops every hour. They caused my eye to go completely bloodshot, swell, and water continuously. Both my eyes became severely light sensitive and I was put in my own darkened room. I lay in agony, wearing sunglasses and a cap, feeling more depressed and hopeless than I ever have. I couldn't read a book, watch TV, look at any visitors or answer my friends messages. It was extremely isolating and I felt like I was trapped in my own head.

The next day, my specialist told me that, 6 months after my initial symptoms, I had finally tested positive for AK. I didn't know whether to rejoice, at finally having some answers, or weep in despair that my prognosis was so awful.  I was discharged from hospital just before Christmas 2018 and it's safe to say it was not 'the most wonderful time of my year'. The following months were spent in eyepatches, sunglasses and hats whilst my eye was still too light sensitive to face daylight. I tried my best, with the help of some wonderful friends, to keep getting out and about and try to keep my spirits up. I saw 2 different counsellors to get the support I needed and tried to stay as positive as possible. My mantra became: It could be worse. Every morning I tried to remind myself that despite this horrific situation, I still had vision in one eye. 

By Spring 2019, I managed to take off my eye patch and cope with sunglasses alone. There was a huge white cloud-looking shape across my eye; a scar. I still have it to this day, and it is the reason I can't see out of my right eye. Over the following few months I slowly reduced eyedrops, the sunglasses were only needed outside,  and the hat came off completely. By July I was given the okay to go and volunteer at my camp in Canada for 4 weeks. Returning to my second home and spending time with my friends again pumped life back into my soul and I began to feel like I was getting some control of my life back. 

As of Feb 2020, I am down to 5 eyedrops a day. My doctor is hoping that by December I will be off all medication and back to living life as normally as I can. I’m excited to not have to bring eyedrops around with me wherever I go and to not hear my alarm screaming at me to take my drops every few hours. However, there is no way to determine whether the Acanthamoeba is completely dead or just laying dormant.  We will never know for certain if it is safe to take me off the medication or if I'll have a flare up and be back to square one again. It's going to be a terrifying time, but I'm keeping my hopes up!  

I'm no longer experiencing any light sensitivity or pain and my eye is not swollen. I feel a million times better than I did this time last year, but the sight in my right eye will never return. I have adapted really well to one functioning eye and I feel really lucky that the scar on my eye is not very obvious, so to look at me, most people wouldn't notice anything; but I do. 

Every day I look in the mirror and I see my little cloud. I'm reminded of it every time I open my eyes. The scar I can't see through. The scar that reminds me how strong I am. The scar that could have been prevented, had there been more awareness of AK.

The money raised is going to help Fight for Sight fund research into more effective treatment and diagnosis of AK. Many cases could also be prevented by the provision of better information about the infection to contact lens prescribers and wearers. I would be so grateful for your support in sponsoring me!

Currently: Scottish Half Marathon on 24/09/23

About the campaign

The AK community is a dedicated fund, fighting for better diagnosis, treatment and prevention of Acanthamoeba Keratitis.

About the charity

Fight for Sight

Verified by JustGiving

RCN 1111438
Fight for Sight, fund ground-breaking research into sight loss that’s already changing lives today and transforming them tomorrow. One in five people will have a serious sight condition in their life time. But with the power of revolutionary science, we can create a world that everyone can see.

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