PATIENT’S JOURNEY
Bringing the patient perspective
A collection of patient stories about AK showcases resilience, courage, and community strength. Engaging with these narratives through watching videos in YouTube or Tiktok, listening to Podcasts, or reading articles 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 – YouTube
Keep water away from contact lenses
I put my life on hold
So much pain I wanted to pull my eye out
Storing my contact lenses in water
Rinsing my contact lenses in water
Keep water away from contact lenses
Videos – TikTok
@all_the_love3 OH my gosh. Repost from @rachelprochnow • On July 3, 2023 I was diagnosed with Acanthamoeba Kerititas, a parasite that destroys your cornea. I got it from showering in my contacts in Austin, Texas. I had been wearing contacts since I was 12 and no eye doctor I had ever been to told me to not shower, swim, or hot tub in my contacts. I always washed my hands before handling them, never slept in them, replaced my contact case every 2 month, and didn’t overwear my contacts (I wore monthlies and replaced them every month). I thought I was doing everything right. I wasn’t. Contacts create micro fissures in your cornea. These are so small you don’t notice them. But when water that has acanthamoeba gets between your contact and your eye, these amoebas latch on to these micro fissures, burrow into your cornea and begin destroying it. Unfortunately, acanthamoeba is in every water source (except boiled water). So you’re in risk if you are wearing contacts and water gets in your eyes. I had to do around the clock drops every hour for 3 months of Chlorohexidine/PHMB. It was the most pain I could ever imagine. I am so incredibly thankful to be through this horrific infection, and thankful for my wonderful surgeon, my family, the organ donor and their family, and God who got me through the hardest time of my life. Please spread awareness by sending this to all your friends who wear contacts. 🩷 Cornea transplant, eye disease, blindness, #corneatransplant #cornea #acanthamoebakeratitis
♬ i like the way you kiss me - Artemas
@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
@bonnieandshereen Parasitc eye infection journey, wrongly diagnosed and medicated for 10 weeks by NHS eye dr! Left blind and with white cebtral scaring on my eye! Tap Water and swimming pools carry this parasite @Thames Water Official Account you are partly at fault for this because your water is disgusting! If you are a contact lense wearer you are at higher risk as they scartch your cornea and thats how the infection gets in. If you have any damage to your eye at all NEVER allow tap water to get into it or use swimming pool til its completely healed! My whole life has changed! #eyes #eye #parasite #parasitic #infection #water #contactlenses #blind #visuallyimpaired #positivity #nhs #negligent #acanthamoebakeratitis
♬ I Think I Like When It Rains - WILLIS
@jxsmineex_ Replying to @deoxy_ribonucleic_acid ⚠️TW: GRAPHIC EYE IMAGES ⚠️ #acanthamoebakeratitis #acanthamoeba #eye #blind #greenscreenvideo #greenscreen
♬ Flowers - Miley Cyrus
Podcast
Articles
“Most Pain I’ve Ever Experienced” Brooklyn McCasland | United States |
“After two weeks I woke up one morning and couldn’t see anything, because of showering with my contacts” Greg Block | United States |
“One year ago, I went blind in one eye from wearing contact lenses in the shower” Rachel Prochnow | United States |
“I’m 26 and Almost Lost My Eye After Showering in My Contacts” Emily Leath | United States |
“Went swimming with my contact lenses and end up having a parasite in my eye” Juliette Vila Sinclair Spence | Netherlands |
“Touching my contact lens with a wet hand left me blind in one eye” Charlotte Clarkson | United Kingdom |
“They applied toxic drops every hour, so I did not sleep very much for 18 days” Amanda Eckersley | New Zealand |
“I was blinded by my contact lens” Irenie Ekkeshis | United Kingdom |
“I could not explain one pain like this in my life” Mike Krumholz | United States |
“Right now, I’m pretty much blind, besides sensing light and dark in my right eye” Vivian Luo | United States |
“A waking nightmare, the worst pain I’ve ever felt in my life” Sydney | Australia |
“It felt like somebody was snapping rubber bands in my eye nonstop with the back of the eye feeling like it was going to blow out” Stacey Peoples | United States |
“L’Incubo Acanthamoeba: la mia storia” Alberto | Italy |
