Testimonials of Acanthamoeba Keratitis patients (AK Warriors)

Acanthamoeba Keratitis (AK), this rare disease, is affecting many lives worldwide, not only the person suffering from it but their families, friends and co-workers.

Below a collection of patient stories and testimonials going through the Acanthamoeba Keratitis rare disease journey. Whether they are in written or in video, you can experience and hopefully feel a bit of what it is like going through this horrible disease. How Acanthamoeba Keratitis impacts our life’s in so many ways.

Our aim is to gathered as many stories as possible from all over the world, to bring awareness and share that this sadly not an “unique” case, numbers are raising .. many are suffering from this.

➡ Please remember if you are going through Acanthamoeba Keratitis, that you are not alone, that there are support groups available to help you get through this journey.

You will find them in  English, Dutch, Danish, Hungarian, Portuguese, Spanish

Videos of AK Warriors

Below a collection of patient testimonials going through the Acanthamoeba Keratitis rare disease journey.

An unwelcomed visitor named Acanthamoeba Keratitis – Water and Contact lenses don’t mix

Did You Know I have a Prosthetic Eye?

Life through our eyes: Living with Acanthamoeba Keratitis

Protect your eyes: Sam’s story— keep water away from contacts

Patient Stories – Ruth Dale going through Acanthamoeba Keratitis

Patient Stories – Ian West  going through Acanthamoeba Keratitis

Acanthamoeba Keratitis Documentary | The Invisible Eye Infection (Pt. 1)

Protect Your Eyes: Te’s Story—Don’t Sleep in Contacts

My AK story

My experience with Acanthamoeba Keratitis

Written stories of AK Warriors

Below a collection of patient testimonials going through the Acanthamoeba Keratitis rare disease journey.

English

  1. A journey I will never forget: CL + H2O = AK by Juliette Vila Sinclair Spence – Optometry Connection March (2022)
  2. Meet The Boston Violinist Playing Her Heart Out While Losing Her Eyesight -WBZ NewsRadio – (2021)
  3. ‘I created the NPO Eyes2Eyes after a CapeTalk interview helped save my eyesight’ by Qama Qukula – CapeTalk – (2021)
  4. 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 – Lucy Benyon – The Daily Mail (2020)
  5. In less than 24 hours Acanthamoeba Keratitis changed my life – Juliette Vila Sinclair-Spence- (2020)
  6. 20 Voices: Edinburgh woman raising awareness of dangers of poor contact lens habits after infection left her blind in one eye – Eye for Sight – (2020)
  7. Protect your eyes: Sam’s story— keep water away from contacts – Bridge City News – Laurice Alexander – (2020)
  8. My so called Amoeba by Heather Green – (2019)
  9. Canadian blinded by water-borne parasite outraged by medication cost – CTVnewsCA – (2019)
  10. Man blinded by parasite after showering with contacts in – FOXNews – (2019)
  11. Anna Krauze’s experience of Acanthamoeba keratitis – Fight for Sight – (2019)
  12. Sydney mother-of-two told she would go blind after contracting eye parasite – 7NEWSAU – (2019)
  13. Woman’s contact lens care leads to parasitic eye infection – Carla Bayron – Wilx10 – (2019)
  14. Woman claims she lost eye after parasite got stuck behind contact lens during shower -Madeline Farber – Fox News (2019)
  15. Blinded by Bug – Woman loses her eye after parasite burrows under her contact lens in shower on holiday – Nika Shakhnazarova – The Sun (2019)
    Marie Mason – My ongoing AK Journey – (2018)
  16. Amanda Eckersley – Woman fights back after losing sight in one eye to rare disease – Nicholas Boyack – Stuff  (2018)
  17. Mom temporarily blinded by parasite after swimming with contacts – Patricia Murphy | SWNS (2018)
  18. Richard Brogan – gets eye infection while on holiday abroad – Kent Online (2018)
  19. Stacey Peoples – Woman Contracts Cornea-Eating Parasite After Swimming Wearing Contacts – CBS Denver (2018)
  20. Claire Wilkinson – Contact lens parasite left woman paralysed and blinded – Toby Meyjes (2017)
  21. Irenie Ekkeshis – I was blinded by my contact lenses – BBC News – Claire Bates – BBC News (2017)
  22. Ian West – My experience of Acanthamoeba keratitis – ODAK (Orphan Drug for Acanthamoeba) – Christina Ceratium – YouTube (2017)
  23. Please Learn From My Acanthamoeba Keratitis Story – Cristina Margolis – The Mighty – (2016)
  24. A parasite was eating my eyeball by BBC Newsbeat (2015)
  25. Stephen Souter – Blinded by contacts: Man loses sight after parasite hidden in tap water BURIES into cornea – Becky Fletcher – Express (2015)
  26. Acanthamoeba Keratitis Parasite in Her Eyeball Almost Blinds Florida Teenager – Ashik Siddique – Medical Daily (2013)

Danish

Dutch

  1. Look into my eyes –  Mijn ervaring met Acanthamoeba Keratitis, meer dan alleen een ernstige oogaandoening – Els – (2021)
  2. Harmien werd halfblind door een parasiet in water: ‘Ga maar niet googelen, zei de oogarts’ – AD – (2021)
  3. Ik was zo blij dat ik weer wat kon zien -Harmien Huijbens – Oogziekenhuis.nl (2020) 
  4. De 100 – wachten of een donor – Harmien Huijbens – hoornvlies transplantatie door acanthamoebe keratitis  – tvblink – (2020)
  5. Met lenzen in douchen? Zo slecht is het voor je ogen Maryse de Bruijne – Magriet – (2020)
  6. Nina (27) droeg lenzen tijdens haar wereldreis en is nu blind aan één oog – Marlies Kikkert – Cosmopolitan (2019)
  7. Petra verloor haar oog: Ik wist niet dat je met lenzen niet mag douchen – Anne Noorman – Vrouw (2019)
  8. Wilma de Vries-Eggink – Een parasiet in je oog: de nachtmerrie van iedere lensdrager – Oogfonds (2018)
  9. Vrouw raakt oog kwijt door parasiet in kraanwater: ‘Doe altijd je lenzen uit‘ – by Editie NL – RTLNieuws (2018)
    Melissa Heuvelman – Mijn AK verhaal – (2018)

French

Hungarian

Italiano

Portuguese

Español