Krista Seurer, age 26, of Aberdeen, S.D., a recently graduated physician's assistant, was able to share real life lessons about Marfan syndrome, with her fellow students.
When Krista was 8 years old, her mother, Pam Siedschlaw, was referred to Mayo Clinic in Rochester, Minn. to try to identify the cause of her ongoing heart health problems. She was diagnosed with Marfan syndrome, an inherited disorder of connective tissues. Krista and her sister Stefanie, then ages 8 and 11, were diagnosed at the same time.
The cause for their disease was likely a spontaneous genetic mutation, unknowingly passed on from mom to daughters. No one else in the family had the disorder.
Krista's experiences with the illness and Mayo Clinic contributed to her desire to work in health care, first as an X-ray technician, and now, as a physician's assistant. "Questions about Marfan syndrome did come up a lot in school," Krista says. "A lot of students had never heard of it."
Krista explained it to classmates this way: "There's connective tissue around the heart. My connective tissue can keep stretching, and not go back into its proper place."
That can lead to serious complications include enlargement of the aorta, aneurysms, leakage of the aortic valve and other heart problems. It also can affect the skeletal system, eyes and other organs. After the diagnosis, Krista, her sister and mother regularly saw their Mayo Clinic physicians to monitor for possible complications. Her mother had many. She had eight surgeries to repair aneurysms and heart valves. She died in 1998, at the age of 43, due to complications from Marfan syndrome.
Krista, as well as her sister, has had fewer problems. In 1999, Krista had surgery to repair a femoral aneurysm. Stephanie hasn't needed surgery. They both avoid strenuous sports or heavy lifting that could stress the heart.
"So far, everything else is OK," Krista says. "I'll eventually need surgery to repair or replace my aorta and possibly my heart valves."
Heidi Connolly, M.D., cardiologist with Mayo Clinic Rochester's Marfan Clinic, says the regular follow-up with physicians who are familiar with Marfan syndrome and the individualized patient care is very important.
"We carefully monitor our patients to check for changes or problems," says Dr. Connolly. "With medical and surgical advances, we do expect most patients with Marfan syndrome to have a near normal life expectancy."
Krista has seen Dr. Connolly regularly for about seven years. "She was my mom's doctor, my sister's doctor," says Krista. "She knows the history. She knows who I am when I call."