The patient perspective

For Irenie Ekkeshis, who was diagnosed with Acanthamoeba keratitis (AK) almost four years ago, her life changed over the course of just a few days. “I was absolutely fine and then three days later I couldn’t see,” she explained. “I was in debilitating pain and the impact on my life from that day on was absolutely profound.”
Unlike the few cases which have received coverage in the national press, where patients had left their lenses in for six months, Ms Ekkeshis, a former contact lens wearer, most likely came into contact with Acanthamoeba through accidental contamination of her lenses with tap water.
Speaking at a recent meeting of patients with the condition, the 35-year-old told OT how, since contracting the eye condition in January 2011, she has undergone two corneal transplants, gone blind in one eye, suffered scleritis and nearly lost an eye to the disease. All of this caused by a tiny organism less than 35 microns across.
Through sharing her experiences, Ms Ekkeshis is now a focal point for the growing number of patients receiving treatment for the condition at Moorfields Eye Hospital, as someone who has been through, and continues to go through, the treatment process.
“It might be rare, but when it does happen, it has an enormous impact,” explained Nicole Carnt, a research optometrist and part of the team at Moorfields leading AK patient focus groups. “As an optometrist, I had read about Acanthamoeba, but I had no real idea of the impact it had on people’s lives,” she adds, “one of the things I’m trying to do is educate optometrists.”
Following a successful breakout session at an open day by the Moorfields Biomedical Research Centre in 2013, a number of AK patients have since attended the hospital to meet other patients with the rare condition. Whether contracting AK from swimming or showering while wearing contact lenses, accidentally splashing lenses with sink water, or, in one case, contracting AK via a scratched cornea, a consistent theme which emerged was the lack of information available for patients, and the paucity of advice they receive from their eye health practitioner.
“They all said they didn’t get very much information at the time of diagnosis,” explained Dr Carnt, adding: “They were having to Google a lot of stuff, and there was a lot of misinformation on websites.”
The optometrist told OT that, led by Ms Ekkeshis, the group has been working on a patient information leaflet “to have some credible information about the condition but also practical information about putting drops in, and managing the condition on a day-to-day basis.”
Maintaining focus

During a recent focus group held at the hospital, the patient accounts of their treatment experiences and the advice they received from optometrists proved to be as variable as the methods in which they contracted the disease, with good and bad examples from both independent and multiple optometrists.
One patient recounted positive experiences with a High Street multiple, saying their service was excellent and that she was advised to see her GP immediately after she attended the practice with an eye infection. Since beginning her treatment at Moorfields, the practice has remained in regular contact, providing her with free spectacles to fulfil her prescription throughout her treatment.
Unfortunately, as another patient confirmed, this example would prove to be far from the norm. Recalling the attitude of his local practice on finding out about his eye infection, he explained how the staff pointed to his poor hygiene practices as the probable cause. “They should know better,” he told the group.

"As an optometrist, I has read about Acanthamoeba, but I had no real idea of the impact it had on people’s lives."

The lack of knowledge around Acanthamoeba and its potential for eye disease reaches beyond optometric practice, with one patient’s experience highlighting the gaps in the knowledge of GPs. Patients presenting with AK may have all the hallmarks of Herpes simplex infection. However, the antiviral treatment prescribed is in effect useless, and worse, corticosteroid eye drops often administered as a first step for infection may actually make the condition worse.
“We know that if you are treated with steroids before, which is often used for treating complex herpes, then the outcome is substantially worse, about fourfold,” said Professor John Dart, a consultant ophthalmologist and eye infection specialist at Moorfields.
The ophthalmologist explained the difficulties in diagnosing AK, which may include co-infection with bacteria or fungi. The effects of these organisms can mask that of the amoebae, delaying a diagnosis of AK and potentially leading to a worse outcome for the patient. “After three to four weeks, the outlook is less good. But if we get [the patient] in the first three weeks and start treatment, the outlook is much better,” he said.
In an effort to track down the common source of infection, Moorfields has been recruiting its patients to do some of the detective work. A study is underway to test water supplies and to add weight to the public health message, and to find the link between prevalence of the bug and rates of infection.
“We know that contact lens wear can be a risk factor...but we really don’t understand how the organism causes that infection and why some patients get infected and others don’t,” explained Professor Simon Kilvington, a microbiologist from the University of Leicester, who is leading the laboratory analysis on the study.
“We’ve developed a water sampling postal kit. These are given to patients, [who] are asked to sample their tap water, sink drains and overflows, these are sent to my lab, where we culture them and look for presence of Acanthamoeba,” the microbiologist told OT.
Any Acanthamoeba found in the samples are cultured in the lab to isolate their DNA and reveal their genetic fingerprint. From then on, it’s a game of genetic 'snap' – matching the DNA fingerprint from two cultures to work out where the infection occurred. If the fingerprint from an amoeba isolated from a patient’s eye matches that of the bugs from their bathroom tap, then it’s highly likely that that’s where the infection was picked up.

Many of the patients at Moorfields readily admit that they received safety advice about Acanthamoeba when they first started using contact lenses, but due to its rare occurrence the severity of the condition and its potential impact on their lives was lost.
One point patients agreed on was that they feel optometrists should reiterate the message. Long-term contact lens wearers may become complacent and take risks, such as bathing or swimming while wearing contact lenses, but if they have the information they can make informed decisions about the risks involved. In addition to this, they are looking to the contact lens industry to do more.
The BCLA has produced ‘No Water’ stickers for contact lens packaging. Designed by Ms Ekkeshis, the stickers highlight the risk of non-sterile water for lens wearers. The hope is that the labelling will be adopted by the industry and promote the message to patients, following a similar approach to the health warnings on cigarette packaging.
This is seen as a definite step in the right direction, as Daniel Hardiman-McCartney, clinical adviser for the College of Optometrists, told OT:  “The College welcomes all steps which support optometrists to communicate the importance of good contact lens hygiene and compliance to their patients.”
However, to date only one contact lens provider has agreed to use the labelling on its packaging – last month Clearlab announced that it will be the first manufacturer to adopt the labels for its contact lens packaging in the UK.
Johnson & Johnson told OT that it “takes the matter very seriously” and directs practitioners and patients to its online resources and Acuvue website for guidance around rinsing and storage of its lenses.OT approached the BCLA, and a number of major contact lens manufacturers comment, but was still awaiting response at the time of going to print. 
“I absolutely believe this needs to be a collaborative effort. I don’t believe in laying the blame at anyone’s door,” Ms Ekkeshis explained. “It’s not anybody’s fault, but it is a problem that needs to be tackled by everyone.”
Highlighting the importance of getting the information to the patients, Dr Carnt told OT: “I think the practitioners are key. They are the gatekeepers and are the trusted ones who are giving the information to patients.”
As an example of the type of approach needed, the optometrist points to the collaboration between the US Centers for Disease Control and Prevention (CDC) and the contact lens industry, which has produced a range of materials for its website.
“Often that information isn’t easily accessible,” Dr Carnt concluded, adding: “People really have to look for it to get it, whereas if they are going in to see their practitioner, there is an opportunity to engage and to talk.”

• A CET article on Acanthamoeba keratitis by Dr Nicole Carnt, previously published in OT (August 22, 2014. P46–49) is available online  
• Resources for practitioners are also available through the US Centers for Disease Control and Prevention (CDC) website
• The College of Optometrists has a factsheet of advice for practitioners on its website, including examination, urgent referral and clinical management of patients with suspected AK.

Image credits: Etan J Tal; Moorfields Eye Hospital, London; Alamy