MarfanLife.net | News blog

New Zealand Insight: In-depth news features on Stuff.co.nz: Rewarding life lived out on a limb: “Living with one leg short of a pair would slow most people down, but for a Wellington radio announcer who lost his leg after a life-saving operation, there was jsut too much life to be lived. Kelly Andrew reports. “

Dr. Max Gomez - Marfan’s Syndrome Is Deadly, Elusive: “Theng of the movie ‘Rent’ this past week was a bittersweet event — the author of the original play, Jonathan Larson, never lived to see the remarkable success.

Larson died the night of the play’s final dress rehearsal of a torn aneurysm in his chest, the underlying cause of which was Marfan’s Syndrome, a disease that affects one in 5,000 Americans.”

High roller - TV & Radio - Entertainment: “Jabe Babe. It’s an unusual name for an unusual woman. She spent her first seven years with her schizophrenic mother (father unknown) before shuttling between foster families until she was a teenager. As an adult, she worked as a dominatrix in the sex industry, a career she enjoyed but eventually tired of. Her most striking feature is her extreme height - 188 centimetres - due to a genetic connective-tissue disorder called Marfan Syndrome. “

Marfan Life - Living with Marfan Syndrome: “Carol Arnette, Francesca Malara and Jeanette Navia help raise Marfan syndrome awareness in the local paper in Williamsburg, Va., The Virginia Gazette. November 26, 2005. Clicking on the article will take you to a larger version. It takes a very long time to load, but you can read the article.”

SignOnSanDiego.com > News > Features — Leap of Faith: “… Ask cast veterans about that night — most heard the next morning of Larson’s exit from an aneurism (related to Marfan’s Syndrome) — and there is still visible pain. Taye Diggs (Benny in ‘Rent’), a big man with sculptural looks and a savvy gaze, tells about the cast being called unexpectedly to the theater that morning (’We thought maybe the show was closing’), then he chokes up. So Anthony Rapp (Mark in the show) tells how one or two stunned souls started to sing, ‘and we knew we had to find ourselves for Jonathan. As the songs came out of us, we felt galvanized but we were in shock. …’”

Dr. Donohue- 11/26/05: “DEAR DR. DONOHUE: I am the guardian of a 13-year-old boy who shows signs of Marfan’s syndrome. How can I find out if he really has it? He is 6 feet tall, very thin and has long fingers and toes. — K.M.”

Hot property: “For die-hard fans of ‘Rent,’ there really was no day but Wednesday. That’s when director Chris Columbus’ $40 million film adaptation of Jonathan Larson’s Pulitzer and Tony award-winning musicald in movie theaters.”

Rising above it all A film about dominatrix Jabe Babe is not your standard documentary, writes Nicole Brady.

Recent progress towards a molecular understanding of Marfan syndrome.: “During the past 10 years, we have witnessed significant progress in delineating the pathological events responsible for the manifestations of MFS.” [Links to abstract]

Marfan Syndrome Community Benefits from the Legacy of Jonathan Larson, RENT Playwright: His hit Broadway show, RENT, featured characters struggling with, and dying from, AIDS but it was Marfan syndrome, a disorder of the body’s connective tissue, that claimed the life of playwright Jonathan Larson before RENTd on the Great White Way. … In January 1996, in the few days before the final rehearsal of RENT, Larson had visited the emergency departments at two different hospitals complaining of excruciating chest pain. One sent him home with a diagnosis of food poisoning; the second diagnosed a mild case of flu. In the middle of the night, without the emergency surgery that could have saved his life, Jonathan died alone in his New York City apartment. It was ten days before his 36th birthday.