Adults with Down syndrome in the Southeast now have a one-stop shop for specialty treatments in Orlando.
AdventHealth is expanding its services for children and adults by opening the Stella Tremonti Down Syndrome Clinic (SMILE, for short).
The clinic is named after the 2-year-old daughter of one of the founding donors — the lead guitarist of the band Creed, Mark Tremonti.
"Stella is the face of the clinic. She's the smile of the clinic," he said standing with his wife, Victoria, a founding donor, during a press conference Tuesday. "When we got the diagnosis that our daughter was going to be born with Down syndrome, we had a new purpose in life. We wanted to raise as much awareness and funds for families with folks with Down syndrome."
The clinic is the first-of-its-kind lifespan Down syndrome program in the Southeast based out of the main AdventHealth Central Florida campus in Orlando. The clinic offers a wide range of specialties including physical, occupational and speech therapies.
Down syndrome is a condition in which a person has an extra chromosome known as trisomy 21 that changes how the body and brain develop.
While the need for pediatric specialty options is great, adults are in severe need as well. In the last 60 years, the life expectancy of a person with Down syndrome increased dramatically from 10 to 60 years, CDC research shows. While the population has grown, access to specialty care has not.
“That lack of access to specialty care is really limited," said Kandi Pickard, the president of the National Down Syndrome Society. "So opening a clinic that has the lifespan of an individual with Down syndrome tied into it is a critical need for (the Central Florida) community.”
There are only about 12 facilities in the U.S. that offer care for adults with Down syndrome, Pickard said.
The society conducted a survey of more than 300 adults with Down syndrome and their family members. Half of the respondents said they had trouble accessing medical providers experienced in caring for individuals with Down syndrome.
"It's sort of like the Wild West once a patient turns 18," said Dr. Asef Mahmud, an adult primary care physician at SMILE. "Patients with all their childhood conditions, it's a shot in the dark. They don't have specialists that feel comfortable. They may not have a primary care physician that feels comfortable."
One of Mahmud's patients is 20-year-old Sean Sikora. His mother, Jenn, said they had previously received tremendous support when Sikora was a child, but she was concerned about transitioning to adult care. However, with SMILE, she's excited about the wide availability of treatment options.
"At 18 or 22, we say that you fall off the cliff," Jenn Sikora said. "Now we are going to have a home to come to where we can work with a provider who understands the issues that we face with having an extra chromosome but also working collaboratively with our specialty providers."
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