COMPREHENSIVE CARE: Skotko talks with patient Kayla Flinkstrom, 12
The MGH and MassGeneral Hospital for Children have launched one of the only comprehensive adult and pediatric Down syndrome programs in the nation, offering multiple clinics each week tailored to meet the unique medical and psychosocial needs of patients of all ages.
The day-long clinics are divided into four age groups, with the aim of creating an easier transition from pediatric to adult specialists as patients age, says Brian Skotko, MD, MPP, the program’s co-director and medical geneticist. “By seeing patients from birth to old age, we also will be able to establish a research center of excellence, dedicated to advancing our understanding of the medical conditions associated with the extra chromosome,” he says.
The Infant and Toddler Clinic, for patients from birth to 5 years old, focuses on educating the family and supporting early development. The Child Clinic maximizes health care and success in school for patients ages 5 to 13. The Adolescent and Young Adult Clinic, for ages 13 to 21, provides support and education as patients transition into adulthood and begin taking greater responsibility for their own care. And the Adult Clinic focuses on maintaining health for those 21 years and older and encourages them to become involved within their communities.
Pediatrician Allie Schwartz, MD, the program’s co-director, says the initiative also is unique in that the clinics occur in the same location, where patients will be greeted by Ben Majewski, a self-advocate resource specialist who has Down syndrome.
“In addition to medical care, we are planning to become a leader in medical education, training the next generation of leaders in the care of people with Down syndrome,” Schwartz says.
For more information visit www.massgeneral.org/downsyndrome.
Read more articles from the 07/27/12 Hotline issue.