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Health Team

Those with Down syndrome living longer, better lives

Posted August 7, 2013 5:55 p.m. EDT
Updated August 9, 2013 11:28 a.m. EDT

— Ishan Munshi is a resource specialist at the Lenox Baker Children’s Hospital at Duke.

The 21-year-old also has Down syndrome.

In the Down syndrome program at the hospital, Munsi is someone that patients can look up to. That includes 16-year-old Matthew Schwab.

“I asked him how to get a girlfriend,” Schwab said of his most recent conversation with Munshi. “He had something quite interesting to (teach) about that.”

What was Munshi’s advice? “Be very gentle,” he told the teen. “Do not make a girl cry.”

Whether the topic is girlfriends, getting a job or going to college at the University of North Carolina Greensboro, like Munshi does, it all represents a dream for many people with Down syndrome, a genetic disorder that affects one out of nearly 700 people born in the United States.

Schwab calls it being a self-advocate.

“What it means to be a self-advocate is to be real independent,” he said.

Dr. Priya Kishnani, a Duke pediatrician and medical geneticist, says there are numerous advances for children born with Down syndrome, including the correction of heart defects and medicine to improve cognition.

They're living longer – often longer than their parents or caregivers.

“We've got to find ways to allow them to be independent in society and to make contributions to society,” Kishnani said.

Munshi's contribution is hope for others born with Down syndrome and for their families.

“They need freedom. They need to be happy, not feel sad and making the parents sad – that isn't good,” he said. “But it's a good thing to talk about how they feel from the heart.”

Munshi’s position with Duke is supported by funding from Anna's Angels, a Cary nonprofit that funds research and programs in Down syndrome.