Acanthamoeba Keratitis Patient Advocate was born after Juliette Vila Sinclair-Spence’s life changed end February 2017 … after more than 40 years wearing contact lenses; sadly she had to experience Acanthamoeba Keratitis (AK) a rare disease, to learn the hard way that whenever she was wearing her contact lenses she must never let them be in contact with water.
The aim of Acanthamoeba Keratitis Patient Advocate, is to provide a platform where all stakeholders involved in the journey of Acanthamoeba Keratitis – patients (AK warriors), contact lens manufacturers, ophthalmologist, optometrist, opticians, cornea specialist, contact lens clinician, researches, contact lens users, pharmaceutical companies – to gather knowledge and efforts to share and educate.
Becoming one team worldwide with the same goal, to standardized protocol, as well as, ways of doing when buying and selling contact lenses, diagnosing and treating AK, supporting the patients and their pain management, a backbone to fall financially as many don’t have the economical resources to fight this rare disease.
Remember no matter where you live, how old you are or what kind of contact lenses you wear, Acanthamoeba Keratitis can get in your eye! so please do not assume it will not be you. You really don’t want to risk it nor experience 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 AK treatment; but it was so aggressive that within 4 weeks since the first sign of Acanthamoeba Keratitis, she ended having an emergency cornea transplant to save her eye and sight. 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 corena transplant.
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 and treating Acanthamoeba Keratitis.
Based on the above, she decided to create a platform Acanthamoeba Keratitis Patient Advocate to gather knowledge and efforts to share and educate. By working together a bigger impact can be achieved.
“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.”