Acanthamoeba keratitis (AK) is an infection of the cornea, the clear ‘window’ at the front of the eye, that can be very painful. The infection is caused by a microscopic organism called scanthamoeba, which is common in nature and is usually found in bodies of water (lakes, oceans and rivers) as well as domestic tap water, swimming pools, hot tubs, soil and air.
Many different species of scanthamoeba exist. Acanthamoeba organisms do not generally cause harm to humans (we come into contact with them when we wash, swim, drink water etc), but they can cause a serious eye disease if they infect the cornea. Not all species of acanthamoeba have been found to cause corneal infections. AK is most common in people who wear contact lenses, but anyone with a corneal injury is susceptible to developing the infection.
Living with Acanthamoeba Keratitis. Acanthamoeba Keratitis (AK) is a rare condition that occurs when microscopic amoeba invade the cornea – the clear layer - at the front of the eye.
The amoeba normally live in water and soil and, although the infection has many causes, there is a known risk of infection that can occur when contact lenses come into contact with water because the contact lens can transfer the amoeba to the cornea.
Around 85% of Acanthamoeba Keratitis cases in the UK occur in contact lens wearers.
We want everyone to enjoy the freedom that contact lenses offer and give you some basic but vital steps to follow to keep your eyes healthy. Sairia, one of our patients, lost a year of her university course and badly damaged her sight due to poor contact lens care.
“I got the Acanthamoeba when I first started uni. So, I started in September and then I was officially diagnosed in like October. So, it was really hard for me to be living in London on my own. I was in halls and I didn't know like two people in halls, so it was just an awkward time, especially when my vision started to go.
“Being on the streets of London with loads of people walking everywhere, I got quite self-conscious about where I was walking. I felt like I couldn't see at that time. Whereas now I'm kind of used to it, but I felt like over there I couldn't see at all. So, I was knocking people in the street, it just knocked my confidence a bit I think and it made me not want to go out. Especially the light, I'd wake up some mornings and my eye would just be really bad and I’d just not want to even open my eyes, let alone like out of bed. I spent most of my day asleep, I barely went into uni.
“And then I got admitted into hospital in the easter, and then just stopped going to uni so I missed the whole summer term. And then I think that really put me back, not in terms of like doing work at uni but socially. It's only now that I'm really integrating with people there because I was just spending so much time back in Southend, and at hospital appointments. I missed so much, and I couldn't go out at all in the evenings or anything, so I didn't really – socially - meet a lot of people, especially when I was wearing the eyepatch! I just didn't want to see anyone.
“[I was] sitting on the bus on my own wearing an eyepatch and a child looks up in his mum and said “is she like a pirate mummy?” I didn't want it wear it, but it was just so much more comfortable when I put it on. So, yeah, I kind of got over the fact that it was embarrassing.
“My grandma basically thought it was conjunctivitis, so she just gave me like a general like medicine for conjunctivitis. I took it home, did it overnight and then when I woke up, in the morning, it made me feel a lot worse about my eye. I felt like there was a proper problem then, whereas before I thought ‘it must be just like a small infection or something’. And I was just a bit worried because this is my eye.
“So, she took me to another doctor who looked at my eye and said ‘Oh. I think it’s an ulcer, or something.’ So, he thought it was an ulcer, and then he took me to another doctor, who was an eye doctor I think, and he said ‘I think you've got this thing called Acanthamoeba, I can't be sure, but you have to go to hospital today.’ I was like ‘oh my god I've got to go to hospital!’
“They started putting me or all these drops every hour, they'd wake me up and put the eyedrops in for about two days, and then I could do that on my own. Then for the first week or so I went back to the doctor every few days, and then it was like every week or so. Then got less and less until, eventually, I was referred to Moorfields.
“I was up and down last year, so my eye would be stable for like a few months and then it would go bad again, so the symptoms would come up. Then I'd notice that my vision would get worse again.
“I've usually been in every month, and this is the first time they said to come back in three months, so it's going very well. Basically I'm right at the end of treatment and within the next couple of weeks I'll completely come off the drops. So they'll be the first time in the last two years”
“Have you had problems with depth perception?”
“Oh yeah! A lot of the time I'll pour a drink and it's just a lot further away from where the drink is, and I just poured orange juice all over the table. Obviously if I'm crossing a road and I need to look in that direction there's no vision over there, so I can’t just glance over and look. I have to turn my head fully. Sometimes I just don't and it's quite bad, but if I'm trying to get somewhere… I guess I've had times where I get beeped to get out of the way.
“But my eye’s been stable throughout this whole school year, so this year has been really fine. I've noticed such a big difference in how I've got to know people a lot easier this year, and integrated a lot better. The difference is really quite a lot.”
You can self-fund or use private medical insurance to fund your treatment.