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 the rare disease named Acanthamoeba Keratitis (AK), 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 share knowledge and efforts to educate contact lens users, eye professionals; as well as prevent contact lens users going through this journey. By working together a bigger impact can be achieved.
Becoming one team worldwide with the same goal, to
1.- STANDARDRIZE protocols for diagnosed as treatment
2.- EDUCATE contact lens user with do’s and do not and eye professionals to first rule out AK if a patient is a CL user and has been in contact with water. Also that the pain management is a must.
3.- SUPPORT the patients and their family / friends
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 sigh 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