Juliette Vila Sinclair Spence is a passionate AK Warrior and Rare Disease Patient Advocate as well as the Founder and Chairwoman of Acanthamoeba keratitis (AK) Eye Foundation. With her patient voice, she brings personal and first-hand experience of what it means to be affected by Acanthamoeba keratitis as well as its aftermath.
She has created a platform Acanthamoeba keratitis Information with key information on Acanthamoeba keratitis as well as the Facebook Support Group to support others going through this journey as well as their loved ones. Her goal is to raise awareness about the rare disease Acanthamoeba keratitis by educating contact lens users (Contact Lens and Water Don’t Mix), eye professionals to stop misdiagnosing Acanthamoeba keratitis, understand the impact the disease has on an AK warrior, providing the right medical treatment (refer to an expert), support like pain management (excruciating pain) as well as mental support (depression) and encourage all contact lens manufacturers that a “No Water Sticker” on all packaging would help the goal.
Juliette, mother of two, not only brings her passion and determination to make a difference, but also her multicultural background, project management and marketing communication skills expertise to the cause.