PATIENT STORIES

A collection of patient stories about AK showcases resilience, courage, and community strength. Engaging with these narratives through watching, listening, or reading can provide comfort and inspiration. Joining one of our support groups offers a safe space for sharing experiences and gaining insights. Together, a network of care and compassion can uplift individuals facing AK challenges.

 

VIDEOS

@piercetheem

Bringing awareness to Acanthamoeba Keratitis 🖤🖤🖤 #acanthamoeba #amoeba #eye #contacts #AK #transplant #optometry #opthalmology

♬ original sound - PierceTheEm

@katelynn_amador

I can’t believe I made it out of the darkest time in my life. Acanthamoeba Keratitis took over my ENTIRE life for months and I mean ENTIRE life. I could no longer work, drive, exercise, I couldn’t even step outside. It was a constant 24 hour extreme pain. For those who don’t know, Acanthamoeba Keratitis is a parasitic cornea infection mostly caused by swimming or showering in contacts. I did both of those things not knowing the risks whatsoever and this was my result. PLEASE do not swim or shower in contacts. I had no idea Acanthamoeba Keratitis was even a thing until it took over my life. I still don’t have my full vision back in my right eye because my cornea is now scarred but honestly I am just happy that the pain is finally over. #acanthamoebakeratitis #acanthamoeba #acanthamoebasymptoms #corneainfection #corneascars #eyeinfection #contactlens

♬ Keeping Your Head Up (Jonas Blue Remix) [Radio Edit] - Birdy

Swimming with
contact lenses
changed my life

Keep water
away
from
contact lenses

So much pain
I wanted to
pull my eye it out

Storing my
contact lenses
in water

Rinsing my
contact lenses
in water

PODCASTS

I would have never believed my story if I didn't go through it

by Cowboys not Eggheads by Sam Fischer | Interview with Tiffany Zeleny, sharing her patient's perspective on AK.

A patient's perspective

by Kristin White, OD Kristin White, OD for Eyes on EyeCare | Interview with Juliette Vila Sinclair Spence.

It's like putting a cigarette in your eye

by by Freddie van Rensburg from Eyes 2 Eyes Foundation | Interview with Juliette Vila Sinclair Spence, sharing her journey and drive to start the AK Eye Foundation.

World EPA congress 2023 special

by P4A Let's Talk Rare By Partners4Access | Interview with Juliette Vila Sinclair Spence on AK patient's perspective.

The patient journey

by Guy Lacey, Manager at FIECON | Interview with Juliette Vila Sinclair Spence.

ARTICLES

I’m 26 and Almost Lost My Eye After Showering in My Contacts (2024) Read more

Man takes a quick nap with contact lenses on, wakes up losing right eye to flesh-eating parasite (2023) Read more

A Patient’s Perspective on Acanthamoeba Keratitis (2022) Read more

Meet The Boston Violinist Playing Her Heart Out While Losing Her Eyesight (2021) Read more

Touching my contact lens with a wet hand left me blind in one eye’: Nanny, 24, reveals how a parasite found in tap water was to blame for her shocking sight loss (2020) Read more

Canadian blinded by water-borne parasite outraged by medication cost (2019) Read more

Sydney mother-of-two told she would go blind after contracting eye parasite (2019) Read more

Wellington woman fights back after losing sight in one eye to rare disease (2018) Read more

Woman Contracts Cornea-Eating Parasite After Swimming Wearing Contacts (2018) Read more

Contact lens parasite left woman paralysed and blinded (2017) Read more

I was blinded by my contact lens (2017) Read more