On August 18, fifteen eye care professionals held the first meeting of the Task Force on Down syndrome and Keratoconus, hosted by NKCF.  Dr. Ann Ostrovsky MD, of New York University leads this group.  Members include pediatric optometrists and ophthalmologists, and cornea and contact lens specialists from across the US who have experience working with the Down syndrome (DS) community.

Previous research confirms children and adolescents with DS are at increased risk for keratoconus but often are not referred to a cornea specialist for testing and treatment.  The Task Force will address the importance of educating primary care doctors as well as families about the need for a comprehensive eye exam during the teenage years.

Task Force member Dr. Phoebe Lenhart MD, of Emory University, shared the findings of her recent paper that highlighted difficulties in accurately testing some children with DS, and the concern that this may lead to inconclusive results.  Imaging tests used to detect keratoconus in the general public may not always be reliable for those with Down syndrome.

In order to preserve sight for individuals with DS, it is essential to refer for crosslinking as soon as KC is confirmed. In some cases, these patients must undergo examination or crosslinking in a hospital setting under anesthesia, which adds to the cost and can increase anxiety among patients and family members.

NKCF is grateful to these doctors who have volunteered to examine the challenges faced by eye care professionals who work with the DS community.  Look for Task Force updates on nkcf.org.

Reference:  Neustein R and Lenhart P, Detecting Keratoconus: Feasibility and Findings in Three Pediatric Risk Groups, J Pediatr Ophthalmol Strabismus, 59:94-101, 2022.