Debra Theine has experienced Marfan syndrome’s impact as a daughter, patient, mother, and grandmother. Her first experience with Marfan syndrome was following her father’s aortic complications in late adulthood, prompting his diagnosis. She subsequently was diagnosed herself and eventually required a prophylactic aortic root replacement.
Carrying her family’s experiences, Debra and her husband, Dan, have raised four boys and five grandchildren with Marfan syndrome, guiding them through all stages of living with a chronic condition, including the challenges of transitioning from childhood to adult care.
“We started going to the Marfan Clinic in 1993 when our oldest boy Mark was 10, our twins, Mike and Kyle, were eight, and our youngest, Paul, was six. Our whole family would go to our appointment together,” said Debra. “We’d get echos and then receive our individual test results as a family. Dan and I believed everything should be openly shared. That way, we could support each other whether the news was good or bad. We would also plan family pizza after the appointments to discuss the day and spend time together.”
“Now, our boys have grown to be fathers and take their own kids to the same clinic they went to as boys,” Debra said. “Marfan has its challenges, but on the other hand, it definitely drew our family closer together. Four generations of our family have grown up with staff at Children’s Wisconsin, who we consider our extended family and have cared for all of us for nearly 30 years now…and counting!”
Continuity of care across generations for a family with the same medical condition like Marfan syndrome can positively impact well-being. With shared medical histories and experiences, medical professionals can tailor treatments more efficiently and effectively, fostering a deeper understanding and support system within the family.
The Theine family has been fortunate to experience continuity of care for all four generations, who are seen by the same providers within the Marfan and Related Connective Tissue Disorder Program at Children’s Wisconsin. The program is staffed by cardiologists, geneticists, and other subspecialists who have training in combined internal medicine and pediatrics programs, allowing for multigenerational care for family members with hereditary arthropathies of all ages.
Lindsey Katzmark, APNP, who cares for the Theine family at the Herma Heart Institute, says that multigenerational care allows the provider a special opportunity to learn the intricacies of a patient and a family.
“You become invested, knowing and caring for the family together,” said Lindsey. “I enjoy family visits and look forward to the opportunity to care for everyone in the room.”
To learn how to establish a care team or find a coordinated clinic that provides expertise in genetic aortic and vascular conditions, visit Marfan.org/clinic-directory.
This article was featured in our newsletter, Connective Issues. Click here to read the fall issue.
The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.