Acanthamoeba Keratitis Eye Foundation

📢𝗗𝗶𝗱 𝗬𝗼𝘂 𝗞𝗻𝗼𝘄? 𝟭𝟬 𝗞𝗲𝘆 𝗙𝗮𝗰𝘁𝘀 𝗔𝗯𝗼𝘂𝘁 𝗔𝗰𝗮𝗻𝘁𝗵𝗮𝗺𝗼𝗲𝗯𝗮 𝗞𝗲𝗿𝗮𝘁𝗶𝘁𝗶𝘀👁️ Acanthamoeba Keratitis (AK) is a rare but devastating eye infection that is often misdiagnosed, leading to delayed treatment and severe consequences—including vision loss. Our latest leaflet highlights 10 critical facts about AK that every healthcare professional, university, eye association, foundation, and medical congress should know. 🔹 Contact lens users are at risk 🔹 AK is frequently misdiagnosed 🔹 Severe pain management is a major challenge 🔹 Early detection is crucial to saving vision This resource was developed with valuable input and support from Prof. John Dart and Prof. Christopher A. Rice, experts dedicated to advancing AK awareness and research. By increasing awareness, we can improve early diagnosis, treatment, and patient outcomes. Help us spread the word and protect vision! 📩 Interested in this resource or need it in another format? Contact us! 📥 Download and share: https://lnkd.in/eMWANc8f #AcanthamoebaKeratitis #EyeHealth #VisionAwareness #ContactLensSafety #Misdiagnosis #PainManagement #AKEyeFoundation The Johns Hopkins University School of Medicine - Harvard Medical School - Stanford University School of Medicine - University of California, San Francisco - University of California, San Francisco - School of Medicine - Wills Eye Hospital Thomas Jefferson University - Mayo Clinic College of Medicine and Science - UCL - Baylor College of Medicine UNSW - All India Institute of Medical Sciences - National University of Singapore - University of Melbourne - King's College London - University of Toronto - American Academy of Ophthalmology - The Royal College of Ophthalmologists (RCOphth) - The Royal Australian and New Zealand College of Ophthalmologists (RANZCO) - World Health Organization International Council of Ophthalmology - The European Society of Cataract and Refractive Surgeons (ESCRS) - WORLD OPTOMETRY FOUNDATION - World Council Of Optometry - Cornea and Contact Lens Society of Australia - European Society of Cornea & Ocular Surface Disease Specialists (EuCornea) - American Optometric Association Cornea : The Journal of Cornea and External Diseases - Cornea & Contact Lens Society of Australia (CCLSA) - BCLA

A heartfelt thank you to ONERO ONERO (El Observatorio Nacional de Enfermedades Raras Oculares) for giving us the opportunity to share who we are as Acanthamoeba Keratitis Eye Foundation and raise awareness about Acanthamoeba Keratitis (AK), a rare eye disease that is becoming more and more common among contact lens users. 🙏 This support helps us expand our mission to assist patients, promote early diagnosis, and emphasize the importance of prevention. We’re excited to continue working together to make a greater impact in Spain. 🔗 Read more about our work: https://lnkd.in/eK_jg4vx #AcanthamoebaKeratitis #AKEyeFoundation #ONERO #PatientSupport #EyeHealth #OcularHealth #Awareness #Gratitude #TuMiradaCuenta

Thesis on Corneal Infections and Ocular Health I’d like to congratulate Judith Veugen on her PhD thesis titled "Sight Under Siege: Understanding Corneal Infections and Ocular Health" at Maastricht University. This is an incredibly important topic, and her research will undoubtedly contribute to the advancement of knowledge in corneal health and infection prevention. With Supervisors: Prof. dr. Mor Dickman, Prof. dr. Paul Savelkoul and Prof. dr. Rudy Nuijts Co-supervisor: Dr. ir. Petra Wolffs Care And Public Health Research Institute (CAPHRI) From the Acanthamoeba Keratitis Eye Foundation, we would like to provide some remarks from a patient perspective: It’s crucial that we start standardizing the message when talking about contact lens (CL) wearers and Acanthamoeba Keratitis. The main cause of AK is the contact of CLs with water—this includes activities like showering, swimming, water sports, and even going to the sauna. It also extends to washing or storing contact lenses in water, washing CL cases with water and not letting them dry, and handling lenses with wet hands. This message needs to be loud and clear to prevent more people from experiencing the same hardships many of us have faced due to lack of awareness. The challenge of diagnosing AK cannot be understated. Around 80% of cases are misdiagnosed, and nearly 50% of those are misdiagnosed as viral infections like HPV and treated with steroids, which worsen the condition. Early diagnosis doesn’t always guarantee full recovery, as some patients even lose their eyes. We need to address the strain of the amoeba, the immune system’s response, and how treatment approaches are still highly experimental without a standardized protocol in many parts of the world. Pain management is another area where patients’ needs often go unmet. The pain caused by AK is unimaginable, and only those going through it can truly understand. Specialized pain management, not just over-the-counter medications, is essential. Psychological support is also critical to help patients cope with the trauma, emotional strain, and financial impact of this condition. Acanthamoeba Keratitis needs to be seen as a life-changing, traumatic experience by healthcare professionals. The most effective way to help patients is with empathy, taking the time to ask how they are truly doing beyond just focusing on the eye. We are looking forward to seeing how Judith’s work can help inform better practices, raise awareness, and ultimately improve the lives of those affected by ocular infections. Let’s continue to work together to ensure better care and understanding for patients everywhere. #AcanthamoebaKeratitis #CornealInfections #PhDResearch #EyeHealth #PatientAdvocacy #HealthcareEmpathy #OcularHealth #InfectiousKeratitis #AKEyeFoundation

📢 Clinical Trial Alert: Advancing AK Treatment 🔬 Exciting news for the Acanthamoeba Keratitis (AK) community! A new clinical trial, the Parasitic Ulcer Treatment Trial (PUTT), is currently underway in the United States, United Kingdom, India, and Brazil. Led by Dr. Jeremy Keenan at University of California, San Francisco, this study aims to determine whether starting corticosteroids one month after anti-acanthamoebic treatment improves visual outcomes. The trial will enroll 232 patients across multiple international sites. Why is this important? ✅ This trial tests the role of corticosteroids in AK treatment, helping resolve a long-standing debate. ✅ Polihexanide 0.08% (Akantior®)—the first European-approved anti-amoebic treatment—will be used in the study. ✅ This could pave the way for more standardized and effective treatments for AK patients worldwide. Where is the trial taking place? 📍 United States: UCSF, UCLA, Johns Hopkins, University of Miami, and more. 📍 United Kingdom: Moorfields Eye Hospital. 📍 Brazil: São Paulo Hospital. 📍 India: Aravind Eye Care System. 📅 March 6, 2025: The first U.S. patient was dosed with Polihexanide 0.08% at UCSF under the study protocol. This trial represents a major step forward in AK research and brings hope for improved treatment and better patient outcomes. 🔗 Learn more: Clinical Trial Info https://lnkd.in/e77JmQ5G #AKEyeFoundation #AcanthamoebaKeratitis #AKAwareness #PUTTTrial #ClinicalTrial #Polihexanide #Akantior #EyeHealth #ResearchMatters

🎶 Listen and Feel the Journey of an AK Warrior 🎵 Acanthamoeba Keratitis (AK) is a battle that tests every part of you—physically, mentally, and emotionally. It’s a fight for vision, for understanding, and for hope. Enrique knows this firsthand. Battling bilateral Acanthamoeba Keratitis, he has transformed his experience into music, turning pain into power and struggle into strength. 🔊 Listen to the song he wrote about his journey: https://lnkd.in/eXHnGrHP 🎧✨ 💙 "Enrique, your perseverance and indomitable spirit inspire us all. We at the Acanthamoeba Keratitis Eye Foundation, along with all AK Warriors in our support group, are wishing you continued strength and a smooth recovery—you’ve already overcome so much." This is more than a song—it’s a voice for every AK Warrior who has fought in silence. Thank you, Enrique, for sharing your journey and inspiring so many. 🔗 Learn more about Acanthamoeba Keratitis and how we support AK Warriors: www.akeyefoundation.com #AKEyeFoundation #AKWarrior #AcanthamoebaKeratitis #MusicHeals #YouAreNotAlone #EyeHealth #PatientSupport #Acanthamoeba #Opthalmology #Optometry #RareDisease #PatientVoice #PatientPerspective #Acanthamoebakeratitis #Acanthamoebakeratitisinfo #AKeyefoundation #AKawareness #ProtectYourVision #EyeHealthMatters #VisionProtection #SaveYourSight #SaveVision #EyeCareAwareness #STOPAcanthamoeba #VisionHealth #Eyeinfectionprevention #Keratitis #hvs #Eye #Contactlens #Contactlenses #ContactLensAndWaterDontMix #ContactLensSafety #NoWaterWithContactLenses #KeepAKinyourRADAR #Opthalmology #Ophthalmologist #ContactLensManufacturers #PatientPerspective #PatientPerspectiveMatters #MyAKBuddy #PreventionMatters

A groundbreaking moment for corneal disease treatment! At The AK Eye Foundation, we are dedicated to advocating for those affected by Acanthamoeba Keratitis (AK) and other vision-threatening corneal diseases. That’s why we are incredibly encouraged by the latest breakthrough from Massachusetts Eye and Ear—more than 90% of patients with corneal blindness had their corneas safely restored after receiving a #stemcell transplant from their healthy eye. This is the first #NEI-funded human stem cell therapy trial, and the promising 12-18 month follow-up results bring hope to so many, including AK warriors who have suffered vision loss. Could regenerative medicine open new doors for AK survivors? We will continue to follow these advancements and advocate for more research, innovation, and treatment options for those battling this devastating disease. Let’s keep the conversation going! What are your thoughts on this breakthrough? #CornealBlindness #RegenerativeMedicine #EyecareInnovation #AKAwareness #AcanthamoebaKeratitis #Research #ClinicalTrial #Ophthalmology

💙 An AK Warrior Story of Strength, Connection & Hope 💙 Acanthamoeba Keratitis (AK) is a battle few understand—until they find themselves in the fight of their lives. Corey Kelly knows this struggle all too well. What began as a simple eye irritation in December 2021 quickly became a relentless battle for her vision and quality of life. Months of misdiagnoses, painful treatments, and uncertainty led her to an experimental procedure that ultimately helped her overcome AK. But what truly carried her through was resilience, a newfound home, and an unexpected companion—Brutus, a one-eyed rescue bulldog who understood her pain in ways no one else could. Corey’s journey is a testament to strength, advocacy, and the power of human connection. Through her experience, she crossed paths with others who had walked the same road—including all AK warriors around the world. AK has a way of forging connections between warriors who never expected to meet, but who understand each other in a way few can. Her story is a powerful reminder: ✅ If you wear contact lenses, never expose them to water. ✅ Awareness can save vision and lives. ✅ Hope is real—Hang On, Pain Ends. Let’s amplify Corey’s voice and continue pushing for education, research, and prevention. No one should have to endure this journey alone. 📖 Read more about Corey and Brutus: 🔗 Brutus the One-Eyed Bulldog https://lnkd.in/ezyZRX-G #AcanthamoebaKeratitis #AKWarrior #Hope #PatientAdvocacy #EyeHealth #ContactLensSafety #BrutusTheBulldog

🔴 A MUST-READ: Another preventable case of Acanthamoeba Keratitis (AK) This heartbreaking story highlights the devastating impact of AK—a severe, painful, and life-changing eye infection that can result in blindness. This incredible AK warrior, Maureen Cronin, shares her journey after unknowingly making a common but dangerous mistake: wearing contact lenses in a swimming pool. ❓ When will we start working as a team—eye care professionals, contact lens manufacturers, regulators, and public health organizations—to ensure EVERYONE knows the risks? 💡 Prevention starts with awareness. No one should have to suffer because they weren’t told. It’s time for real change. The article is from PEOPLE Magazine | PEOPLE.com. If you are going through **Acanthamoeba Keratitis**, we have a **support group** to connect with others who truly understand your journey. 💙 Acanthamoeba Keratitis AK Support Group - Grupo de Soporte https://lnkd.in/e9b7fuKp If you want to know more about **Acanthamoeba Keratitis**, visit our site for valuable information and resources. https://lnkd.in/ehxE7hg2 🔗 Read the full article here: https://lnkd.in/euNxvhq4 #Acanthamoeba #Acanthamoebakeratitis #Acanthamoebakeratitisinfo #AKeyefoundation #Raredisease #Rarediseases #Awareness #AKawareness #ProtectYourVision #EyeHealthMatters #VisionProtection #SaveYourSight #SaveVision #EyeCareAwareness #STOPAcanthamoeba #VisionHealth #Eyeinfectionprevention #Keratitis #hvs #Eye #Contactlens #Contactlenses #ContactLensAndWaterDontMix #ContactLensSafety #NoWaterWithContactLenses #KeepAKinyourRADAR #Opthalmology #Ophthalmologist #Optometry #Optometrist #Optician #ContactLensManufacturers #PatientPerspective #PatientPerspectiveMatters #MyAKBuddy #PreventionMatters

Acanthamoeba Keratitis: One of 6,000 Rare Diseases We are real. We are rare — but increasingly common. We are excruciatingly painful. We are blinding. We put your life on hold. Acanthamoeba Keratitis (AK) is more than just an eye infection. It is a life-altering, often misunderstood disease that needs greater awareness and research. As the world’s first foundation Acanthamoeba Keratitis Eye Foundation we are dedicated exclusively to AK, committed to driving change — from prevention and diagnosis to treatment, research, and patient support. Let’s work together to shed light on this devastating condition and advocate for those whose voices often go unheard. #RareDisease #AKAwareness #PatientAdvocacy #AcanthamoebaKeratitis

Empowering Through Knowledge - Sharing new research by others to support learning and innovation. 🔬 𝙉𝙚𝙬 𝙎𝙩𝙪𝙙𝙮: "Prevalence of HSV Genomic Signatures Among Acanthamoeba Hosts and Contaminated Lens Cases," has identified Herpes Simplex Virus (HSV)-positive genomic signatures in clinical Acanthamoeba Keratitis (AK) isolates and contaminated contact lens cases. The researchers concluded that the high prevalence of HSV genomic signatures might signal an unrecognized Acanthamoeba-HSV association and point to the need for reassessing current management strategies. 💡 This raises an important question from our point of view: Could this discovery impact how AK is diagnosed and managed in the future? Link: https://lnkd.in/eyVYg84P Authors: Juan Carlos Navia, M.D.; Alexander Alfonso; Darlene Miller; Maestre-Mesa Jorge; Heather Durkee; Paula A. Sepulveda Beltran; Felipe Echeverri Tribin; Salomon Merikansky; Jaime D. Martinez; Harry W. Flynn, Jr.; Eduardo C. Alfonso; Jean-Marie Parel; Guillermo Amescua #AcanthamoebaKeratitis #HSV #EyeHealth #Research #Innovation #KnowledgeMatters