Wade Olson

Photo courtesy of Wade Olson

Then a 30-year-old science teacher, Wade Olson of Cedar Falls, Iowa, had done ample reading on Marfan syndrome before visiting Mayo Clinic in Rochester, Minn. for a diagnosis in 1984.

Marfan syndrome, a disorder of the connective tissue, afflicts about 200,000 people in the United States and can affect the skeletal system, blood vessels, heart, lungs, eyes and other organs.

Olson felt he likely had the disorder and feared the worst. He'd always struggled with poor eyesight, had dislocated lenses in his eyes and fit other characteristics of those with Marfan syndrome — such as being tall, having long fingers and a high arched palate.

But he returned home comforted after meeting a Mayo Clinic physician, geneticist Hymie Gordon, who reassured Olson, now 49, that his life needn't be hampered by the genetic disorder.

"I always remember Dr. Gordon saying, 'You need to go on with your life.' That was comforting to hear," Olson recalls.

"It wasn't so much getting the diagnosis that helped me," Olson says, "but finding out what the possible treatments were and getting some reassurance that I'm not the only one who has this."

Marfan syndrome can be inherited from either parent or can develop as a new genetic mutation, which appears to have been the case in Olson's family. Neither of his parents were diagnosed with the disorder and his three daughters, ages 22, 20 and 13, have been tested and show no signs of having inherited it.

"It's been a great relief, a great blessing, that this genetic problem started and ended with me," Olson says.

Olson still visits Mayo annually for a check-up. He had heart surgery more than 10 years ago to have a section of his ascending aorta replaced and the aortic valve replaced with a mechanical valve.

He's been impressed with his initial and subsequent visits to Mayo Clinic, saying he appreciates how the doctors at Mayo work together and seem to have a common goal in mind.

"I always return from Mayo feeling at peace about the whole thing, thinking that everything that could be checked was checked," Olson says.

Heidi Connolly, M.D., a cardiologist and director of Mayo Clinic's Marfan Clinic, says the collegiality displayed among her peers is an asset for patients with Marfan syndrome.

"Mayo Clinic's model of multi-disciplinary care makes Mayo an ideal facility for patients with a disorder that affects multiple organ systems," Dr. Connolly says. "Patients can see a cardiologist, ophthalmologist, geneticist, cardiac or vascular surgeon and an orthopedic surgeon, all during one visit if required. There is excellent communication between the physicians involved in the care of an individual patient. This is a tremendous advantage to the patient."

Marked improvement in treatment options for people with Marfan syndrome has led to near-normal survival rates for those with the disorder, Dr. Connolly says. But rigorous patient follow-up is necessary to facilitate a long life.

Despite having the disorder, Olson views it as having had a minor effect on his enjoyment of life. He enjoys spending time with his family, returning to northern Minnesota where he grew up and teaching science.

"Certainly having Marfan syndrome has affected my life, but I think there's a lot of hope," Olson says. "I'm able to work, I'm very healthy and when things happen there's always a treatment for it. You can still have a wonderful life."