When Sarah was diagnosed with keratoconus in 2018, it came as a shock to her mother Sylvia. She had never heard of the condition, nor had Sarah ever complained of deteriorating vision. However, unbeknownst to her mom, Sarah’s doctor had been monitoring her for the condition for years. Sarah, a young woman with Down syndrome, was now presenting noticeable progression since her last appointment three years ago.

During their initial appointment, the eye doctor explained that 5-15% of people with Down syndrome also have keratoconus and recommended that Sarah consider FDA-approved corneal cross-linking. The FDA-approved procedure is the first and only therapeutic treatment that stiffens the cornea to slow or halt the progression of the condition to preserve vision. After learning more about the benefits and risks, Sylvia and Sarah decided it was the best treatment option. Sarah successfully underwent the procedure in both eyes, and at the same time, earned the nickname “The Mayor of the Office” for her cheery disposition.

On World Keratoconus Day, Sylvia and Sarah sat down with us to share their story and discuss the unique challenges faced by people with intellectual disabilities. Receiving an accurate diagnosis, the importance of parents advocating for their children, and Sarah’s future aspirations now that her condition has been appropriately managed were all topics of the conversation.



VIDEO SERIES 1 of 4: Sylvia & 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


You can read more of Sarah’s Keratoconus Journey here. For more information on keratoconus, follow Living with KC on Facebook, Twitter, Instagram, and YouTube.