Often undiagnosed and frequently misunderstood, the mention of Marfan syndrome in public usually prompts a startled stare, followed in hot pursuit by ‘what syndrome?’. This is why Marfan Awareness Month is so important. And this is why the syndrome leaves people feeling lonely in their diagnosis, and isolated in their condition. But fear not! You are in illustrious company! For Marfan syndrome is writ large on the cinema screen, it lurks behind the hottest sounds on Broadway, and its athletic flights of fancy dominate sports fields worldwide. Below are three notable names. Please join us in our Search For the Missing 15,000 Marfs unknown to the Marfan Trust.
PETER MAYHEW - The world’s most famous Wookiee!
Establishing overnight success as the hairy hero Chewbacca in 1977’s surprise hit Star Wars, Peter Mayhew had been waiting to happen for some time. His path to fame went from bottom up, with his preternaturally huge feet, which had become the stuff of local legend. Their size was recorded for posterity by a local journalist in an article which caught the attention of a film producer who in turn gave him an uncredited role of a minotaur in the film Sinbad and the Eye of the Tiger. This led circuitously to his defining role of Chewbacca.
The London-born son of a policeman, Peter Mayhew grew to 7 feet 2 inches tall. With both gigantism and Marfan syndrome, he used his height supremacy as a hospital porter to change signs and lightbulbs. And as the first screenings of Star Wars played to enraptured audiences, Mayhew was still mopping hospital floors in Croydon. That soon changed. The defining embodiment of Chewbacca, Mayhew spent much of his life hiding behind yak hair and rescuing Han Solo in acts of derring-do.
JONATHAN LARSON - Playwright
On 29 April 1996, the rock musical Rent opened on Broadway, winning immediate critical acclaim, six Tony Awards and the Pulitzer Prize for Drama. But Its creator Jonathan Larson was not present on opening night to soak up the applause or revel in the praise. Nor could he take to the stage months later to accept his much-deserved Tony and Pulitzer awards. For he had died alone in his apartment on the eve of his musical’s off-Broadway premiere of an aortic dissection.
Prior to this he had sought help for chest pain at two New York City accident and emergency rooms. Doctors at the first attributed his pains to food poisoning. A few days later, at a second hospital, he was told he had the flu. No one had diagnosed that he had a heart defect caused by Marfan syndrome. On January 25, 1996, he died after an artery carrying blood away from his heart enlarged and ruptured. He was 35.
ISAIAH AUSTIN - Basketball Player
Transcending the limits of his sport, Isaiah Austin is one of the world’s most talented basketball players. A superstar at university he was on the cusp of being ushered into America’s prestigious National Basketball Association draft when a shock diagnosis intervened. At 7 feet one inch tall, he was discovered to have Marfan syndrome and subsequently barred from playing the sport professionally. However, two years later in 2016 he was allowed to resume the game competitively and does so to great acclaim!
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