When it's time for a check-up, Heather Larkin and Cody Pope look forward to seeing the doctor. "Well, I think he's funny," says Cody. Heather echoes that sentiment, saying "He's funny!"
Their doctor, Edward Lose heads a clinic devoted to adults with Down syndrome. "It was actually the parents who suggested to us several years ago that we create a clinic like this modeled after one in Chicago. The individuals come to us, and the providers come to their room," Dr. Edward Lose.
The need for age-appropriate care has emerged as Down syndrome folks live into their sixties. "Not only do we have to think about their specific Down syndrome complications, we have to think of their age-related complications, like hearing loss, arthritis, things like that," says Dr. Lose.
Typical visits include traditional care, along with specialties like audiology, and weight counseling. "Our folks with Down syndrome seem to have an acceleration of that process right when they hit puberty. Normally-thin Down syndrome individuals before then gain a rapid amount of weight, sometimes 50 to 100 pounds over a year to a year-and-a-half," says Dr. Lose.
And with comprehensive information, families gain a perspective on new health territory. "They would say 'Oh yeah, yeah, that's normal, that's good,' and it was all. And so it made you, made you feel like, things were, like you were kind of on track," says Dona Larkin.
Insights that keep Heather and Cody on track for healthier and happier lives.
There are a limited number of adult-focused down syndrome clinics in the U.S., such as the one at the University of Alabama at Birmingham. For information on Down syndrome clinics in the U.S., visit the National Down Syndrome Congress website.