UNC Research is Hope #UNCResearchIsNC #UNC #healthcare

20-month-old Ben Sesler has Hunter Syndrome, a rare and progressive genetic disorder that primarily affects boys and can lead to organ damage, skeletal abnormalities, hearing loss, and cognitive decline.

Hunter Syndrome affects about 500 boys in the U.S. and about 2,000 worldwide. There currently is no cure.

The Muenzer MPS Center in the UNC School of Medicine is conducting a clinical trial for children with the disorder to evaluate a treatment that could help mitigate the cognitive and body effects caused by the syndrome.

While Ben did not qualify for the clinical trial, he was able to receive a medication called Elaprase, which helps treat the physical effects of Hunter Syndrome, and was developed through similar clinical trials.

"We do still believe UNC has given a lot of hope because they are conducting research… and we've actually met many of the boys in their trials," says Ben's mom, Megan. "It's awful, of course, that our son couldn't qualify for those, but those boys and that research is paving the way forward for a better treatment for Ben. In general, medical research — for our family, it’s everything."

Видео UNC Research is Hope #UNCResearchIsNC #UNC #healthcare канала UNC Health