Clearly KC Podcast

nationalkeratoconusfoundation

Welcome to Clearly KC, a podcast produced by the National Keratoconus Foundation, featuring information about life with this eye disease. Each month, Dr. Melissa Barnett OD, a leading authority shares valuable insights, speaks with medical professionals who treat this condition and listens to patients and families affected by keratoconus. Our goal is to share information to help you manage your keratoconus, seek out the best treatment options and live a full and productive life. Clearly KC is for patients, family members, and medical professionals interested in learning more about KC. This podcast is intended to provide general information about KC and should not be considered an alternative to medical consultation and treatment with your eyecare provider. Dr. Melissa Barnett, OD, FAAO, FSLS is an internationally recognized expert in keratoconus and other conditions that affect the cornea. She is Director of Optometry at University of California, Davis. National Keratoconus Foundation is the oldest and largest organization dedicated to raising awareness of the eye disease keratoconus. While we located at University of California Irvine, our reach is international. To learn more, visit nkcf.org read less

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Episode 25 - Social Media Influencer

Episode 25 - Social Media Influencer

Clearly KC host Dr. Melissa Barnett OD spends some time with Ash Arellanes, digital content creator and enthusiastic KC advocate. Ash shares her journey of vision loss until she finally was diagnosed with keratoconus. She remembers how she experienced relief to finally have an answer along with confusion and loneliness of having a condition she knew nothing about. Ash had an existing online presence for her dog, Demi, and she started using her social media to share stories of life with keratoconus. Through her TikTok account, @demi_the_vlog_dog, Ash educates and entertains her 320,000 followers, including many in the keratoconus community.

Episodes

Episode 25 - Social Media Influencer

Episode 25 - Social Media Influencer

Clearly KC host Dr. Melissa Barnett OD spends some time with Ash Arellanes, digital content creator and enthusiastic KC advocate. Ash shares her journey of vision loss until she finally was diagnosed with keratoconus. She remembers how she experienced relief to finally have an answer along with confusion and loneliness of having a condition she knew nothing about. Ash had an existing online presence for her dog, Demi, and she started using her social media to share stories of life with keratoconus. Through her TikTok account, @demi_the_vlog_dog, Ash educates and entertains her 320,000 followers, including many in the keratoconus community.

Episode 24 - Insights from a Patient/Scientist

Episode 24 - Insights from a Patient/Scientist

Clearly KC host Dr. Melissa Barnett OD welcomes colleague Dr. Jason Marsack PhD from the University of Houston, where his lab is engaged in correcting higher order aberrations. Dr. Marsack shared his story of a keratoconus diagnosis while a college student and his vow to apply his engineering skills to improving the vision of others. He and Dr. Barnett discuss isolation, empathy and the “KC Personality” which he observes may be the search for answers and frustration with the technology gap that many patients experience. He is encouraged by advances in KC treatments and the dedication of scientists and practitioners to improving the detection and management of these individuals.

Episode 23 - Recollections of Carl Domke

Episode 23 - Recollections of Carl Domke

Clearly KC host Dr. Melissa Barnett OD chats with Carl Domke of McKinney, Texas. Carl is the winner of the 2023 World KC Day Photo Contest with a photo collage that celebrates improved vision with contact lenses. The 80-year old photographer shared what it was like to be diagnosed with KC in 1959 and how, as a high school sophomore, he was given contact lenses that ‘changed his life’ and made it possible to continue his education. Carl also shares the story of waiting for donor tissue and his 3-day stay at Wills Eye Hospital where he had a corneal transplant 20 years later.

Episode 22 - Tips & Tricks from Wellness Advocate

Episode 22 - Tips & Tricks from Wellness Advocate

Clearly KC host Dr. Melissa Barnett OD meets up with Myeisha Essex of Los Angeles to discuss tips, tricks and hacks to simplify life with keratoconus. Myeisha shares her KC journey from diagnosis during graduate school to her career as an entertainment journalist. Her eye doctor convinced Myeisha to refocus on her vision health, and she left long days under bright studio lights to start Essex Media Group and to work as a meditation and wellness coach. Since she has transitioned to a mindfulness advocate, Myeisha has learned to slow down and pay attention to life’s lessons. In their conversation, Dr. Barnett mentions the Scleral Lens Education Society (www.sclerallens.org) as a resource for finding an expert in fitting scleral contact lenses. Learn more about Myeisha’s activities at www.myeishaessex.com.

Episode 21 - Cornwall Illustrator

Episode 21 - Cornwall Illustrator

Clearly KC host Dr. Melissa Barnett OD visits with Poppy McCabe, a recent graduate of Falmouth University in England. Poppy was runner-up in the 2023 World KC Day Photo Contest. Her submission shows her at her final art exhibit at school. Investigating symptoms associated with her Ehlers Danlos syndrome, Poppy learned keratoconus was the source of her vision struggles. She used her diagnosis as inspiration for an installation that invites viewers to experience the visual distortions that accompany keratoconus. Through graphic design, Poppy found a way to channel her creativity to raise diseases awareness.

Episode 20 - Down syndrome

Episode 20 - Down syndrome

Clearly KC host Dr. Melissa Barnett OD asks Dr. Ann Ostrovsky MD about managing the care of individuals with Down syndrome who are diagnosed with keratoconus. Dr. Ostrovsky who is chief of ophthalmology at ECU Health in Greenville, North Carolina stresses the importance of avoiding eye rubbing and scheduling regular eye exams to monitor for vision changes. She notes that it can sometimes be difficult to get reliable test results and shares tips to make these patients more comfortable. Dr. Ostrovsky notes the importance of working with parents or caregivers who are vested in optimizing their child’s eye health and partnering with them when considering procedures like crosslinking.

Episode 19 - Inspirational South Africa Teacher

Episode 19 - Inspirational South Africa Teacher

Clearly KC host Dr. Melissa Barnett OD welcomes Dylan Muyambo of Cape Town, South Africa. For the 2023 World KC Day Photo Contest, Dylan submitted a joyful picture with his students on a field trip. Dylan shares with Dr. Barnett how he struggled with his vision from a young age, was diagnosed with severe keratoconus at age 9, and underwent corneal transplants in both eyes by the time he was 20. Dylan admits because of his poor vision, he relies on attentive listening and believes keratoconus motivated him to a career in education.

Episode 18 - Pubtometry

Episode 18 - Pubtometry

Clearly KC host Dr. Melissa Barnett OD invites Dr. Araba Otoo OD to talk about pubtometry – a word Dr. Otoo uses to describe the intersection of optometry and public health. Ghana-born Otoo is a recent graduate of The Ohio State University College of Optometry; she started Cherish Eyesight & Vision, a nonprofit whose mission is to increase vision health literacy and educate the public about eye conditions. Partnering with NKCF, Otoo and her global team of animators created short entertaining videos about keratoconus as part of the Vision Tales project. To watch Cherish Eyesight Vision Tales, visit https://www.youtube.com/@cherisheyesightvision1001 or go to https://www.cherisheyesight.org

Episode 17 - Higher Order Aberrations

Episode 17 - Higher Order Aberrations

Clearly KC host Dr. Melissa Barnett OD sits down with keratoconus guru Dr. Christine Sindt OD, from University of Iowa for a discussion of higher order aberrations (HOA), a common concern of individuals with keratoconus. Dr. Sindt notes doctors have sympathized with their patients who complain of halos or double vision but until recently could do little to fix the problem. While the technology is still in its infancy, Dr. Sindt reports understanding of how to correct for the complicated optics that cause glare and ghosting are better appreciated. Within a few years, she is confident contact lenses will be able to reduce vision issues associated with HOAs.

Episode 16 - Innovations

Episode 16 - Innovations

Clearly KC host Dr. Melissa Barnett OD is joined by ophthalmologist Dr. Steven Greenstein MD and optometrist Dr. John Gelles OD, partners at the Cornea and Laser Eye Institute in New Jersey. Dr. Gelles shares results of wave front guided scleral lenses, an emerging technology that creates a 3-D model of the cornea to craft individualized contacts. Dr. Greenstein spoke of CTAK (corneal tissue addition keratoplasty) a new surgical procedure that adds biocompatible donor tissue to reshape corneas, improving vision and contact lens comfort. Drs. Barnett, Gelles and Greenstein recounted their curation of the 2023 Keratoconus Education Initiative, a comprehensive resource for practitioners. To download a copy, visit: https://reviewob.com/2022-keratoconus-education-initiative

Episode 15 - A Need for Pediatric Screening

Episode 15 - A Need for Pediatric Screening

Clearly KC host Dr. Melissa Barnett OD catches up with KC expert Dr. Andy Morgenstern OD who shares that his career in keratoconus was inspired when he first had access to pentacam tomography, a technology that visualizes the back (posterior) of the cornea. He also spoke of a soon-to-be published paper that used tomography to screen Chicagoland students to reveal the prevalence of pediatric KC in the US is much higher than previously predicted. As co-founder of International Keratoconus Academy for Eye Care Professionals, Dr. Morgenstern shared details of the upcoming IKA symposium for optometrists and ophthalmologists on May 18-19, 2024 in Bethesda, MD. For more information, visit www.gotoper.com/AM-IKA

Episode 14 - An Invisible Disability

Episode 14 - An Invisible Disability

Clearly KC host Dr. Melissa Barnett OD celebrates World KC Day with returning patient and health advocate Rachel Dungan. They discuss keratoconus as an invisible disability that others may not perceive or appreciate. Rachel declares that KC makes her move through the world and pick up cues from others differently. The two also assess the importance of not letting KC hold you back, even if it means taking extra steps to achieve your goal. They discuss the importance of trusting yourself and communicating changes in health and vision with your doctor in order to find the right treatment options.

Episode 13 - The Future of Crosslinking

Episode 13 - The Future of Crosslinking

Clearly KC host Dr. Melissa Barnett OD chats with Sacramento-based cornea surgeon Dr. Sam Lee MD. Dr. Lee has performed corneal crosslinking since the procedure earned FDA approval in 2016. He described the procedure in detail and noted the results are quite good, with only 1-5% of patients needing retreatment and emphasized the importance of crosslinking as soon as there is any evidence of progression. Dr. Lee and Dr. Barnett ended with a comparison of epi-on versus epi-off protocols, and Dr. Lee predicted that the future would bring less invasive and more individualized crosslinking techniques to treat keratoconus.

Episode 12 - Pregnancy & Keratoconus

Episode 12 - Pregnancy & Keratoconus

Clearly KC host Dr. Melissa Barnett OD visits with Dr. Suzanne Sherman OD, Associate Professor in the Department of Ophthalmology at Tampa’s University of South Florida. Dr. Sherman and Dr. Barnett discuss the impact of estrogen and progesterone on vision. Increased hormone level resulting from pregnancy can lead to many changes in the body, including decreased stiffness in the cornea, increasing the bending and shifting that is common in keratoconus. Dr. Barnett agrees that doctors should educate all patients of the possibility of temporary vision changes during pregnancy and the post-partum period so that patients will not be alarmed.

Episode 11 – Patient Advocate Rachel Dungan

Episode 11 – Patient Advocate Rachel Dungan

Clearly KC host Dr. Melissa Barnett OD visits with Rachel Dungan, a Director with Academy Health, a Washington DC policy institute. In 2016, Rachel’s short video, “How Do I Look?” was awarded first prize at the NKCF Film Festival. Since then, she has addressed lawmakers, clinicians, and health researchers about her keratoconus journey. Rachel shared her experience of living with undiagnosed KC and how it affected her confidence, her health, and her interactions with others. Rachel reflected that keratoconus impacted her career choice and led her to her present position advocating for more patient input and engagement in health research.

Episode 10 – Dry Eye Disease

Episode 10 – Dry Eye Disease

Clearly KC host Dr. Melissa Barnett OD and Dr. Daddi Fadel, DOptom celebrate Dry Eye Awareness month by answering listener questions. Dr. Fadel is a clinician scientist at the University of Waterloo in Canada and co-author of “Clinical Guide for Scleral Lens Success” with Dr. Barnett. Dr. Fadel observes that a majority of individuals with keratoconus also suffer from dry eye disease. She describes the different types of dry eye and how the tear film bathes and nourishes the ocular surface. Dr. Barnett mentions several new and existing products available to manage dry eye.

Episode 9 - Law Professor Louis Karaolis

Episode 9 - Law Professor Louis Karaolis

Clearly KC host Dr. Melissa Barnett OD visits with Louis Karaolis LLB, PhD, professor, Head of Law, and Director of Academic Affairs at Cyprus Business School. An expert on EU law, he has been visiting lecturer at UK law schools, and law school admissions examiner at Corpus Christi College, Oxford. Now splitting his time between London and Cyprus, Karaolis shares his experience of being diagnosed as a teenager and undergoing a corneal transplant at age 23. He shared the study of law entails endless reading of textbooks and journals and, at times, he wondered if he had chosen the wrong profession. Karaolis proposes that living with keratoconus strengthened his tenacity and resolve to overcome challenges.

Episode 8 -Professional Race Car Driver Joey Gase

Episode 8 -Professional Race Car Driver Joey Gase

Clearly KC host Dr. Melissa Barnett OD was joined by Joey Gase, NASCAR Xfinity owner-driver and ambassador for National Keratoconus Foundation. Joey shared his story of wearing eyeglasses and contacts from an early age and becoming frustrated with frequent vision changes in his 20s. His eye doctor, unable to improve his vision beyond 20/40, diagnosed keratoconus, the cut-off for participating in NASCAR events. Gase talked about the impression molded scleral lenses he is now wearing and his efforts to educate fans about KC. Dr. Barnett and Gase share their experiences with organ, eye and tissue donation for loved ones.

Episode 7 - Corneal Transplantation and Eye Banking

Episode 7 - Corneal Transplantation and Eye Banking

Clearly KC host Dr. Melissa Barnett OD and Dr. Jennifer Li MD, professor of ophthalmology from Univ. of California-Davis, and chair of the Eye Bank Association of America, discuss how corneal transplantation is undergoing changes with advances in surgical techniques. Dr. Li relayed how cornea tissue is prepared and sent to surgeons within days of a donor’s death for implantation. She reported that those who have undergone transplant for advanced keratoconus can expect to have many years with healthy transplanted tissue and noted the number of corneal transplants for keratoconus has dropped significantly since treatment options like corneal crosslinking and scleral lenses have become more commonplace.

Episode 6 - The ’So-Called’ KC Personality

Episode 6 - The ’So-Called’ KC Personality

Clearly KC host Dr. Melissa Barnett OD and Dr. Muriel Schornack OD from the Mayo Clinic in Rochester debate if there is such a thing as a keratoconus personality. Individuals with KC tend to score differently on personality tests, but Dr. Schornack points out that the disease impact often comes in youth or young adulthood where coping mechanisms are not fully developed. KC can have a profound impact on an individual's ability to navigate life, yet the condition is invisible to observers. They agreed doctors need to listen and if a patient expresses anxiety or depression, referral to a mental health provider would be appropriate.