Patient Video Series: Keratoconus and Down Syndrome
Each year on November 10th, we celebrate World Keratoconus Day, dedicated to raising awareness, educating, and advocating for those living with the condition. As the driving force behind our work, our patients’ stories keep us motivated throughout the year. Their journeys inspire us to pursue new innovations and breakthroughs to improve the lives of those living with keratoconus and corneal ectatic disorders.
This past November, as part of our efforts to celebrate World Keratoconus Day, we were joined by Sarah Moran, a young woman with Down syndrome, and her mother Sylvia, who shared their journey with our Corneal Health team. When Sarah was diagnosed with keratoconus in 2018, it came as a shock to her mother. She had never heard of the condition, nor had Sarah ever complained of deteriorating vision, but since her last appointment three years ago, Sarah began presenting noticeable progression. The Moran’s learned that 5-15% of people with Down syndrome also have keratoconus1 and chose to pursue iLink™ FDA-approved corneal cross-linking to slow or halt the progression of the disease.
“I really didn’t know what [keratoconus] was. I had never heard of it, and my initial reaction was, this is something else added to the list of medical issues that people with Down syndrome have to deal with. so the reaction more was, so what do we do about it?” – Sylvia, Sarah’s mom
In the videos below, Sylvia and Sarah sit down with us to discuss the challenges people with intellectual disabilities face to obtain an accurate diagnosis, why it is important for parents to advocate for their children, and what the future holds for Sarah now that her condition has been treated.
VIDEO SERIES 1 of 4: Sylvia and Sarah discuss their journey to a keratoconus diagnosis
VIDEO SERIES 2 of 4: Learning about keratoconus and available treatment options
VIDEO SERIES 3 of 4: Sylvia discusses Down syndrome, keratoconus and spreading awareness
VIDEO SERIES 4 of 4: Looking towards Sarah’s future & the importance of vision
1 Carina Koppen, MD; Inge Leysen, MD; Marie-José Tassignon, MD, PhD
Riboflavin/UVA Cross-Linking for Keratoconus in Down Syndrome
Journal of Refractive Surgery. 2010;26(9):623-624