MarfanLife.net | News blog

New York Daily News - Boroughs - He gets gift of life after holiday scare: “When families look back over the years, holiday memories have a way of blending together, but the Perez family isn’t likely to forget the details of Christmas 2004.

David Perez, his wife, Corinne, and their three children drove from Orlando to Huntington, L.I., Thursday as a holiday surprise for Perez’s father, Ramon. But a bigger and much less welcome surprise came when the 28-year-old Perez suffered crippling chest pains early Christmas Eve and had to be rushed to North Shore University Hospital for emergency heart surgery.”

Mom puts daughters first - December 24, 2004: “Buckles’ 13-year-old daughter, Jasmine, suffers from Marfan Syndrome, a connective tissue disorder.
And taking her daughter to many doctor’s appointments has required her to miss many hours of work.
‘She’s been seen by five different doctors,’ Buckles said. ‘I have to take a lot of time off of work there but she’s more important to me than anything else.’”

Henry’s Hearts, a non-profit organization co-founded by ten-year-old Henry Floyd who has Marfan syndrome, a connective tissue disorder that affects the heart.

Rapid City Journal: Spearfish family needs help: “Cailotto, a 21-year-old single mother of two girls, ages 3 and 18 months, said Madison has been diagnosed with infantile marfan syndrome. The disease is a genetic defect that weakens body tissues especially in and around the heart. The disease is also affecting Madison’s eyes.”

RedNova News - Watching for Marfan’s in Primary Care: “It is not unheard of to see features of Marian’s syndrome in primary care, says Dr Stefan Cembrowicz.

For a long time I had regarded Marian’s syndrome as one of those obscure conditions seen only on professorial ward rounds.The textbooks describe this as a fairly rare condition at one in 5,000 of the population, but having encountered a few patients in our practice, I find that it is not uncommon to spot features of this syndrome quite incidentally. ”

Yes, he means MARFAN syndrome, not Marian’s syndrome! He gets it right for the rest of the article, but the first two paragraphs say Marian’s syndrome. I blame spell-checker.

Texas Heart Institute, St. Luke’s welcome world renown surgeon - - Houston Business Journal: “Dr. Denton A. Cooley on Wednesday appointed Dr. Joseph S. Coselli to the position of chief of adult cardiac surgery for the cardiothoracic surgical program of the Texas Heart Institute and St. Luke’s Episcopal Hospital. “