Andrew's story: Usher syndrome

Young Andrew Needham experienced hearing loss before displaying balance problems with his early walking. Cochlear implants and physical therapy helped address these conditions but then he began to experience vision loss at 2 ½ years old. His parents, Sara and Charles Needham of Bellevue, Neb., have no family history of Usher syndrome so they knew nothing about the genetic disorder that was affecting their son.

The Needhams visited several local physicians including a neurosensory genetics group that clinically diagnosed Andrew as having Usher syndrome, a condition that affects both hearing and vision. Physicians arranged an OtoSCOPE genetic test with Richard Smith, MD, professor of otolaryngology – head and neck surgery at University of Iowa Stead Family Children’s Hospital, which confirmed the cause of hearing loss and type of Usher syndrome that Andrew had.

The family was referred to Arlene Drack, MD, a pediatric ophthalmologist specializing in genetic disorders who determined that Andrew’s vision issues are due to Retinitis pigmentosa associated with Usher syndrome. While at UI Stead Family Children’s Hospital, Andrew was also evaluated by vision rehabilitation expert Mark Wilkinson, OD, who helped the family identify resources and strategies to help young Andrew adapt to his situation and maximize his remaining vision.

“It meant a lot to have a diagnosis and explain how the puzzle fits together. We realized there are others out there dealing with this condition and that we are not alone,” comments Sara. “It’s great to have a joint clinic where all the experts are working together and to be treated at a place that is up on the latest research.”