We collected the testimony of a patient, Mr. Alberto Visentin, who suffered from the bad experience caused by Acanthamoeba keratitis.
How were you diagnosed with Acanthamoeba keratitis?
It all started with an eye discomfort that got worse and worse (I had the feeling as if I had a pebble stuck under my eyelid). When I went to hospital, the Acanthamoeba keratitis was at first mistaken for a herpetic form and then for a bacterial form. Subsequently, thanks to the intervention and teamwork between Dr. Marco Tavolato of the Sant'Antonio Hospital in Padua, Prof. Andrea Leonardi and Dr. Daniela Lazzarini of the Policlinic of Padua, I performed the confocal microscope examination that immediately revealed the presence of Acanthamoeba cysts on the corneal surface. From there began my whole ordeal with the disease, which was treated with a preparation based on PHMB, which proved to be fundamental for the treatment of this pathology, produced by the pharmaceutical company S.I.F.I. S.p.A. and made available free of charge by the same company to all ophthalmologists who request it for the treatment of their patients.
See http://www.sifigroup.com/pagine-Progetto_Odak/54_4/ita/
What were the most painful aspects of your experience as a patient?
As I reported in detail on the blog - http://www.acanthamoeba.org/ - The most traumatic aspect of this disease, besides the physical pain that gives you no respite, is not being able to do anything at all. With a swollen eye that burns and tears continuously, a person is totally disabled and is forced to stay stuck in bed for weeks at a time. You can't sleep, you can't go out because the light bothers you, you can't read, you can't watch TV, in short, you can't do anything at all. I spent entire days lying in bed looking at the ceiling with only the radio as my companion to distract me a little from my suffering.
Has Acanthamoeba keratitis caused permanent damage to your vision?
The Acanthamoeba has unfortunately created permanent scars on my cornea, resulting in blurred and double vision. In the coming months, I will evaluate with my ophthalmologist how I can improve my vision.
What psychological impact does this pathology have?
Acanthamoeba keratitis is indeed a terrible disease because it renders you non-self-sufficient within a very short time. Once you have contracted the parasite, you are no longer able to perform the most mundane actions of daily life. All this has a tremendous impact on the psychological level, causing you to experience mood swings. Perhaps in many cases, external psychological help, provided by a serious professional, can alleviate the sufferings of the sufferer throughout the convalescence.
How did you learn about the Patient Guide provided by Moorfields Eye Hospital and how useful was it?
I was looking for up-to-date information on this rare disease and scouring the various sites on the Internet, I discovered that Moorfields Eye Hospital in London had released a booklet (in English) that gave some excellent tips to all those, like me, who had contracted Acanthamoeba. In a nutshell, this booklet contains small but valuable practical tips (often ignored by doctors) that help patients and their families to better manage the complications caused by the disease.
What other sources of information and comparison with other patients have you come across?
On the internet you can easily find general information about the disease. What was missing was a direct exchange of news and real-time updates between all sufferers. And so on Facebook I created the group 'Acanthamoeba keratitis' - see https://www.facebook.com/groups/653759518099485/ - where all members can freely intervene by reporting their experience, asking questions and/or simply receiving a word of comfort.
For a better understanding of this pathology and its effects 'l'Oculista italiano' makes available to patients with Acanthamoeba keratitis, their relatives, friends and all those close to these patients the Patient's guide to Acanthamoeba keratitis.
Dr. Carmelo Chines
Direttore responsabile
English 
Italian