The Marfan Foundation is deeply offended by the highly acclaimed HBO program, VEEP, and its writers and producers, for incorporating “Marfan syndrome” into the script of the May 1 episode as an insult to one of the characters of the program.
“”We are deeply disturbed that ‘Marfan syndrome’ was used as a disparaging comment when, in fact, it is a life-threatening genetic disorder,” said Michael Weamer, President and CEO of The Marfan Foundation. “The 200,000 people in the U.S. who have Marfan or a related disorder face a complex medical journey for their entire life. Even with medications and various surgeries, they fight every day to maintain a good quality of life. They were mortified that such a popular television program would use their diagnosis as a slur.”
One woman in our community was upset that “it crystalizes all the derogatory attitudes that Marfan people have to go through in their life.” Another said “it made my heart sink.”
Marfan syndrome is a life-threatening genetic disorder of the body’s connective tissue. It affects the heart and blood vessels, the bones and the eyes. Knowing the signs is the key to early and accurate diagnosis and life-saving treatment. Without a diagnosis and treatment, people are at risk of an early sudden death due to a tear in their aorta, the large blood vessel that takes blood away from the heart. In addition to medication and surgery, affected people must make lifestyle adaptations to protect their fragile aorta; this includes refraining from competitive and contact sports, such as basketball.
“We urge the producers of VEEP and the actors to try to right this situation by working with us to raise awareness of the signs of Marfan syndrome and save lives because half of the people who have this condition are not diagnosed. With a diagnosis and treatment, they can live a normal lifespan,” said Weamer.
The Marfan Foundation
The Marfan Foundation, which was established in 1981, creates a brighter future for everyone affected by Marfan syndrome and related disorders. We work tirelessly to advance research, serve as a resource for families and healthcare providers, and raise public awareness. We will not rest until we have achieved victory. Learn more and get involved at Marfan.org.
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.