By | September 3, 2010 12:00 am

Down Syndrome Patients, Families Urge Empathy

First-year M.D. students from the UCF College of Medicine received a heart-felt lesson this week on the challenges and hopeful determination of people living with Down Syndrome. As part of their HB1 module, the doctors-in-training spoke with families from the Down Syndrome Association of Central Florida, including the mother of a 7-month-old baby with the condition and a 22-year-old man who wants to be a world-wide advocate for people with disabilities.

Dr. Jane Gibson, professor of pathology, first invited patients with Down Syndrome and their families to the College of Medicine last year to help medical students understand the lives of people with the condition. The testimonies were so inspirational that Dr. Gibson organized another visit this year.

Amy Van Bergen, executive director of the association, talked to the students about the prejudices and myths associated with Down Syndrome and how improved medical care has increased the life expectancy of patients with the condition from only 9 years in 1924 to over 58 years today. Ms. Van Bergen’s son, Wils, has Down Syndrome but has defied many of society’s misperceptions by graduating from high school, attending college classes and living in an apartment at the University of North Florida. She described the devastation of parents who dream for nine months of having a “typical” baby and then learn that their child has been diagnosed with Down Syndrome. “Our role, at the Down Syndrome Association,” she said, “is to help give people the dream back.”

La Taasha Byrd, whose 7-month-old daughter has Down Syndrome, told the students that as doctors they must combine their scientific knowledge with a caring heart. “If you have no empathy,” she said, “your degree is worth nothing.”

Ryan Popp’s father, Roger, formed the local Down Syndrome Association in 1991, after his son was born with the condition. Ryan has a full-time job, a driver’s license and is learning Japanese, Chinese, Korean and German because he wants to be an international advocate for people with disabilities. Ryan emphasized that patients with Down Syndrome want to be involved in their own medical care and spoke of the importance of early intervention in helping people reach their full potential.

Ryan said he is aware that many people consider Down Syndrome a disability, but “that’s not going to stop me.”

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