About Us

Acanthamoeba Keratitis Information platform is part of the Acanthamoeba Keratitis Eye Foundation, both being created by Juliette Vila Sinclair-Spence who went through this eye rare disease in 2017 and since then has made her mission to raise awareness, provided easy access information for those going through this debilitating and life change experience.

The aim of Acanthamoeba Keratitis Practical Information, is to provide a place, at one click away practical information in a friendly environment in regard to Acanthamoeba Keratitis, what it is, ways to diagnose, type of treatments are being offered, hospital with AK experience, support group for patients, family and friends, data base of research documents as well as testimonials.

Sharing information is our power to help prevent this rare disease as well as help those going through it.

Juliette Vila Sinclair Spence, Acanthamoeba Keratitis Patient Advocate - the face behind it.

Juliette Vila Sinclair Spence

Born in Venezuela, living in The Netherlands and mother of two amazing kids. Diagnosed in February 2017, within 2 weeks she started the Acanthamoeba Keratitis treatment; but it was so aggressive that within 4 weeks since the first sign of AK, she ended having an emergency cornea transplant (also called therapeutical cornea transplant) to save her eye and sight. She feels honoured and grateful to his cornea donor for given her the gift of sight but specially giving her the joy of life.

She has been left with an aftermath of nerve damage (Trigeminal neuralgia) apart from high astigmatism (due to the shape of new cornea). Nonetheless she feels grateful for having been treated so quick and having had the emergency cornea transplant; as many AK warriors are being misdiagnosed, mistreated and have a long painful journey.

Her purpose in life has become bringing awareness of the dangers of mixing contact lenses with water, being a voice for thousands of AK warriors worldwide going through this journey, as well as helping create with the professional a standard protocol on diagnosing, treating Acanthamoeba Keratitis as well as a support system.

” Remember no matter where you live, how old you are or what kind of contact lenses you wear, AK (Acanthamoeba Keratitis) can get in your eye! so please do not assume it will not be you. You really do not want to experience it. And last but not least: If you are a contact lens users in any doubt ALWAYS seek advice from your contact lens clinician, ophthalmologist, cornea specialist, … don’t wait. ” – Juliette Vila Sinclair-Spence