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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

For more information on iLink FDA-approved cross-linking, visit our website and follow us on Twitter, Facebook, and LinkedIn.

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

Using Photrexa® Viscous (riboflavin 5’-phosphate in 20% dextran ophthalmic solution), Photrexa® (riboflavin 5’-phosphate ophthalmic solution), and the KXL® System, the iLink™ corneal cross-linking procedure from Glaukos is the only FDA-approved therapeutic treatment for patients with progressive keratoconus and corneal ectasia following refractive surgery.*1

[Photrexa IFU/p1/col1/para3/lines1-4]

Indications

Photrexa® Viscous (riboflavin 5’-phosphate in 20% dextran ophthalmic solution) and Photrexa® (riboflavin 5’-phosphate ophthalmic solution) are indicated for use with the KXL System in corneal collagen cross-linking for the treatment of progressive keratoconus and corneal ectasia following refractive surgery.

Important Safety Information

Corneal collagen cross-linking should not be performed on pregnant women.

Ulcerative keratitis can occur. Patients should be monitored for resolution of epethelial defects. The most common ocular adverse reaction was corneal opacity (haze). Other ocular side effects include punctate keratitis, corneal striae, dry eye, corneal epithelium defect, eye pain, light sensitivity, reduced visual acuity, and blurred vision.

These are not all the side effects of the corneal collagen cross-linking treatment. For more information, go www.livingwithkeratoconus.com to obtain the FDA-approved product labeling.

You are encouraged to report all side effects to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

*Photrexa® Viscous and Photrexa® are manufactured for Avedro. The KXL® System is manufactured by Avedro. Avedro is a wholly owned subsidiary of Glaukos Corporation.

Reference

1. Photrexa [package insert]. Waltham, MA: Glaukos, Inc. 2016