Teri Dean cofounded the Heart of Iowa chapter of the National Marfan Foundation after her son’s diagnosis, a process that took 14 years and numerous hospitalizations. The group is hosting several upcoming events to raise awareness and money, including a Moonlight Stroll and Have Heart run this weekend.
One in 5,000 people have Marfan syndrome and about half of those people do not know they have the disorder, Dean said.
What is Marfan syndrome?
Marfan syndrome is a connective tissue disorder that affects the heart, blood vessels, eyes, bones, joints and lungs. It is often, but not always, characterized by tall stature and disproportionately long legs and arms.