Affected by a rare parasite that has made him half blind, he calls for vigilance

2023-08-03 19:12:50

A man from the Laurentians wants to raise public awareness about a corneal infection who got caught in the water and caused him to lose the sight of one eye and his quality of life.

“I want to at least inform people, because it would have been so easy to avoid,” laments Sylvain Daoust, who has Acanthamoeba keratitis.

It was on his return from Cuba, last January, that the Laurentian consulted his optometrist after noticing that he had had very red eyes and blurred vision for a few days. He was then prescribed drops, but since his condition did not improve, his eye continued to cause him pain and he could no longer see clearly, he was urgently transferred to ophthalmology at Saint- Jerome.

“For a month, I saw different specialists and they finally took samples. I was then told [la nouvelle] “, adds the one who has absolutely no idea how he contracted the parasite.

The still relatively unknown parasitic infection usually affects the cornea of people who wear contact lenses and often causes permanent loss of sight, which can go as far as complete loss of the eye.

In addition to physical pain, affected patients often live in isolation and need regular assistance.

“I have to put drops day and night, I have become very sensitive to light, the sun is unbearable, it gives me severe migraines […] Morally also it is difficult”, deplores the man who underwent a corneal transplant last March in order to improve his vision.

On sick leave since January, the man who was an account manager for Horizon mobile has completely lost sight in his right eye and spends several hours a day in the dark to protect his sensitive eyes.

“For me, it’s important to talk about it, to inform people, because once you contract this infection, it mortgages a year of your life”, explains the one who has always been very vigilant with his lenses. corneal.

Worrying phenomenon

In Montreal, we treat all patients in the region. Every year, between 30 and 40 people are affected, but several factors worry the D^rs Tanguy Boutin from Hôpital Maisonneuve-Rosemont and Samir Jabbour from the CHUM who closely follow the evolution of this parasite.

“Unfortunately, the drugs we use are not antibiotics, but toxic agents used long term. It is very difficult to access it because of drug shortages [que les fabricants de médicaments peinent à fournir]“, relates the D^r Samir Jabbour, ophthalmologist and cornea specialist at the CHUM.

Additionally, patients with this infection become more resistant to medication, requiring more invasive interventions such as surgery or complex procedures in order to obtain medication from across the border.

“In the case of Mr. Daoust, we had to make special requests to Health Canada in order to obtain Miletefosine [un médicament non disponible au Canada]“, he adds.

The very expensive drug will cause the bill for the medication Sylvain Daoust needs to get through his days to jump to $450 a week. He still considers himself lucky to have access to it.

While he still cannot return to work, Mr. Daoust does prevention in those around him and educates those close to him about the infection he is suffering from.

“People are not aware of it, they do not know what it can have as an impact […] people need to be more informed when buying contact lenses. We must warn those who wear them not to keep them on to go swimming, or to the spa and in the shower, ”he concludes.

-With the collaboration of Hugo Duchaine

Box Info:

Acanthamoeba keratitis contracts when water enters microcracks on the surface of the eye, 83% of infected patients wear contact lenses at the time of contamination. On the Facebook group called Acanthamoeba Keratitis Global Support Group of which Sylvain Daoust is a member, he observes that new people affected by the infection are joining the group every day.
Many cases are reported in England where 19.5 people per million are currently suffering from the disease.
It is possible to contract this parasite in different ways, especially when swimming in a lake, a swimming pool or even in the shower.
Symptoms are similar to any eye infection, such as redness, sensitivity to light, eye pain, foreign body sensation in the eye, or decreased vision. If in doubt, it is best to consult your optometrist.
To avoid contracting the infection, it is recommended to remove contact lenses before bathing, to use daily disposable contact lenses, not to wear them for several days or to change contact lens cases every month.
The first treatments used are drops, such as Chlorhexidine. Oral medications may also be prescribed and a corneal transplant may be performed for cases where the eye is too infected.