The patient journey | Acanthamoeba keratitis

FIECON Patient Perspectives

Juliette Vila Sinclair-Spence is a passionate Acanthamoeba keratitis (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.

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, 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" label on all packaging would help the goal.
In this podcast, Guy Lacey, Manager at FIECON, talks to Juliette about her patient journey since she contracted Acanthamoeba keratitis in 2016 and shares the details of her long and arduous journey to diagnosis and finally treatment. She has devoted much of her time to help others learn more about this disease and has became an advocate for patients, families and providers by creating the Acanthamoeba Keratitis (AK) Eye Foundation.
Acanthamoeba keratitis is a rare but often devastating ocular condition that can lead to severe vision impairment, corneal transplantation, and even enucleation. It is caused by a free living amoeba that is typically found in soil and water, including tap water.
The main risk factor for AK is contact lens wear. AK presents initially with a high degree of pain, often out of proportion to the clinical signs observed. Many times, this condition is misdiagnosed as herpes simplex keratitis.
Our innate immune response can fight the infection, but once the amoebas have breached the corneal epithelium, it is difficult for the immune system to fight these parasites due to the fact the cornea is an immune-privileged tissue. Cysts can remain in a dormant state on corneal tissue for close to 3 years making recurrent infection possible.