They’re living longer, healthier lives than ever before … but their healthcare needs aren’t fully understood. That’s why one local doctor who’s devoted his practice to adults with Down syndrome wants to share his experience.
For 22 years, Dr. Brian Chicoine has treated patients with Down syndrome. It’s his life’s work and he loves every minute.
Dr. Brian Chicoine, ADSC Director: “I do. The folks with Down syndrome, that’s the highlight.”
He knows his patients well — all 5,500 of them at Advocate’s Adult Down Syndrome Center in Park Ridge.
Dr. Brian Chicoine: “We have the advantage now of having seen over 5,500 people. There isn’t anyone else with that sample size in the United States. We want to take that information and share that.”
Not only would Dr. Chicoine like to share his deep understanding of the patients so near and dear to his heart, he’d like to create specific screening guidelines for what is now an aging population.
Dr. Brian Chicoine: “Even as late as the 1980, the life expectancy was only in the 20s and 30s, and now it’s shot all the way up to 60. So some of these screening issues in the past really were not important because we didn’t worry about what to do for adults because there weren’t any.”
That’s because 40 to 60 percent of babies born with Down syndrome have congenital heart disease. Surgical advancements have made a significant impact – boosting survival rates. Patients are living longer – presenting new challenges their caregivers.
Dr. Brian Chicoine: “There weren’t evidence-based recommendations with regards to just the routine screenings. Everyone would typically have mammograms, colon cancer screening, etc.”
But some common diseases among the general population aren’t as common among adults with Down syndrome. Colon and breast cancer rates are low. And even though there is a higher incidence of obesity among people with Down syndrome, doctors see very little heart disease, high blood pressure and type 2 diabetes.
Dr. Brian Chicoine: “It’s almost non-existent in people with Down syndrome. There are some conditions that are more common, for example celiac disease is more common in people with Down syndrome.”
Christine Maxwell is among them.
Christine Maxwell: “I had to change my diet because I’m a celiac.”
She’s mastered the art of preparing gluten-free meals, still, the diagnosis took her by surprise. The 36-year-old hadn’t experienced typical symptoms, but a routine blood test revealed her allergy. Most cases aren’t as clear.
Dr. Brian Chicoine: “The blood test for people with down syndrome is not as accurate as it is in people without Down syndrome. If we are going to have screening, perhaps there is something different we need to do. Having the opportunity to pause and think and do it in a thoughtful way makes a big difference.”
Story Written by Katharin Czink