In Focus Retina International

In this episode of the In Focus Podcast, we sit down with former RI president Christina Fasser to talk about the challenges the retina community face when emerging from lockdowns into the “new normal.” Christina talks about adjusting to changes in one’s surroundings, attending regular eye check-ups, and re-entering the job market, as well as what governments and policymakers can do to ease these transitions.

In this episode of the In Focus podcast, Retina International CEO Avril Daly speaks with Elfride De Baere about the importance of receiving a genetic diagnosis for IRDs.

Elfride De Baere, MD, PhD, is currently Professor of Ophthalmic Genetics at Ghent University, clinical geneticist at the Center for Medical Genetics, Ghent University Hospital and Senior Clinical Investigator of the Research Foundation Flanders (FWO). Her research areas of interest are the genomic and pathophysiological basis of inherited retinal diseases; developmental genetics and gene regulation; and clinical and functional genomics. She is the coordinator of several European research consortia and member of the European Retinal Disease Consortium (ERDC) and the European Reference Network for Rare Eye Diseases (ERN-EYE). Elfride serves/ on the scientific program committee of ARVO and ESHG and is on the Scientific Advisory Board of the Foundation Fighting Blindness.

In this episode, Avril and Elfride discuss the importance of genetic testing for IRDs from the perspective of research. Elfride tells us of the benefits of receiving a genetic diagnosis for retinal patients and their families, as well as the challenges that people in different regions face in accessibility. They close the episode by discussing what gives them hope for the future of genetic testing, including electronic platforms, educational programs, international registries, and more.

This episode is a true story that comes from Visionaries, a series created in collaboration with Retina International and Roche to highlight the unique experiences and challenges faced by people living with retinal conditions and their loved ones.

This is Jess’* story. She received an unexpected diagnosis of diabetes-related retinopathy and DME shortly after graduating from university.

In the beginning, Jess found treatment challenging and received little support. She became depressed, but a psychiatrist helped her feel more positive about the future.

“It’s difficult, but I’m determined to live my life as an ordinary person, to work, and have my own independence," Jess says.

Retina International CEO Avril Daly hosts this podcast with special guest commentator, Renza Scibilia, diabetes advocate who writes at ‘Diabetogenic’.

* This is a real story of a young woman living with DME in China. To respect her wish to remain anonymous, we are using the pseudonym of Jess and a voiceover actor in this podcast.

For this episode of the In Focus podcast, in honor of Diabetes Awareness Month, RI CEO Avril Daly speaks with consultant ophthalmologist Professor David Keegan. Professor Keegan is a graduate of the Royal College of Surgeons in Ireland and now specialises in medical and surgical retinal disease including paediatric retinal surgery and diabetic retinal disease. He runs the Mater Multidisciplinary Inherited Retinal Degeneration and Diabetic Retinal Treatment Services along with the Retinal Clinical Trials Unit. He is the lead for Ireland’s collaborative application to the European Reference Network for Rare Eye Disease (ERN-EYE) and is also a member of the Retina International Scientific Medical Advisory Board (SMAB).

In this episode, Avril and Professor Keegan discuss how diabetes affects the eyes and why early detection is so important in preventing sight loss. Keegan tells us how screening for diabetic eye diseases works, and what preventative measures and treatments are available to preserve sight. They also discuss the theme for this year’s World Diabetes Day, “Access to Diabetes Care: if not now, when?” Unfortunately, in many parts of the world, people with diabetes don’t have access to the education and screening programs that are vital to their eye health.

Professor Keegan also talks about the stigma around diabetes, and why it’s important to be compassionate and understanding towards people with this lifelong condition. Diabetes can affect people of all ages, all around the globe in many different ways. With over 500 million people in the world living with diabetes today, it is vital that they receive the ongoing care and support needed to manage their condition, avoid complications, and maintain their vision.

If you’d like to learn more about this year’s World Diabetes Day, visit https://worlddiabetesday.org/.

For more information on Diabetes-related Eye Diseases, please visit the DED toolkit (link) on our website: https://ded.retinaint.org/

In this episode of the In Focus podcast, RI Communications Officer Dana Hufe speaks with Claudette Medefindt and Karen Denton from Retina South Africa. Claudette Medefindt is the Head of Science and Patient Services for Retina South Africa and has been a patient advocate for the past 40 years. Karen Denton heads Advocacy and Education there, and is a worldwide expert on AMD and diabetes.

They discuss the impacts of the Covid-19 pandemic on the retina community—on eye health, daily living, and the progress of retinal research. They also offer advice for adjusting to the challenges of the pandemic, through living a healthy lifestyle and utilizing technology for assistance.

For more information on the impacts of Covid-19 on the retina community, you can visit our World Retina Day press release.

In this episode, Retina International Communications Officer Dana Hufe talks with legally blind culinary expert Mary Mammoliti. Mary is a disability advocate and the owner of the blog and Instagram account Kitchen Confession. She also has a food segment on a biweekly radio show and has made TV appearances on The Marilyn Denis show and Breakfast Television among others. Mary hosts two podcasts and has just begun the first season of her television show Dish with Mary.

In this episode, Mary talks about how her diagnosis of retinitis pigmentosa led her to leave her career in finance and become a chef. Mary says that she is now the happiest she has ever been, even with less sight. She tells us about her interesting life, cooking with crickets, and how she navigates the kitchen using all her senses. She also discusses the importance of inclusivity and the presence of people with disabilities in the media.

You can learn more about Mary from her blog and  Instagram account, both titled Kitchen Confession. You can also watch her show Dish with Mary on Accessible Media Inc.