MarfanLife.net | News blog

“Pam Waters travels off the digital road
‘While most people are at home on their computer looking at parks and planning their trip, I’m already on the trail. I’m there,’ says traveler Pam Waters.
Amazingly, living without cable TV, a computer, cell phone, or even a digital camera, Pam Waters is a happy and contented woman. ‘Whadya need to be happy?’ the 59 year-old St. Charles resident said. ‘I got a roof over my head and I’m excited about life, have been for years.’”

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A commonly prescribed blood pressure medication may provide the first ray of hope in preventing potentially deadly complications of Marfan syndrome, a genetic disease that weakens the structural meshwork of blood vessels.

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“Dr. Ron Lacro is running his third Boston Marathon in honor of two special patients, Henry Floyd and Yamil Kouri.

He’s been treating the two boys for years because they both suffer from Marfan syndrome.

It’s a genetic disorder which can affect the connective tissue in all of the body’s major systems and organs including the heart and lungs.”

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“What makes the Ewerts so unusual are the physical traits that seem to be associated with the arrhythmias.

Other than Ame’s mother, Karen, everyone in the family has a cluster of inherited physical characteristics, known as MASS syndrome or MASS phenotype.

The syndrome is related to Marfan syndrome, a somewhat better-known condition that has affected such noted figures as Abraham Lincoln; Charles de Gaulle; Akhenaten, father of King Tut; and sad-eyed actor Vincent Schiavelli, who died in December of lung cancer. About 200,000 people in the United States have Marfan syndrome and related conditions such as the lesser-understood MASS.”

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