MarfanLife.net | News blog

Broken Hearts - Nevada Appeal Brian and Kristi Rasmussen’s problems run deeper than anything a skilled surgeon can fix. Both are afflicted with heart disease, which has put them through six surgeries. They fell in love almost 10 years ago, and married on a hot August day. Since then, they’ve been struggling to get by, jumping from home to home and job to job. Every day brings uncertainty. Their one hope: A better life for their two children.

Named after Antoine Marfan, the French pediatrician who first described it in 1896, “Marfan syndrome” is a genetic disorder of the body’s connective tissue. February is National Marfan Syndrome Awareness month.

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For the up to an estimated 200,000 Americans who currently have been diagnosed with the disease, there is no known cure. But according to Lexington resident Suzanne Kouri, president of the Massachusetts Chapter of the National Marfan Foundation, “There has been an upsurge in research in recent years, including a new ongoing study at Children’s Hospital in Boston, and much more work has been done to alleviate the symptoms.”

Marfan what? Life with Marfan Syndrome > General News > Stories > Denver > YourHub.com
inding myself single at the age of 55, I became romantically interested in a female co-worker and friend of several years. After we dated awhile it became obvious that we were going to spend our lives together. She said that there was something you must know before committing; she said “I have Marfan Syndrome.” At that moment I didn’t have a clue what “Marfans” was or the impact it might have on her life and the life of her loved ones.

Review: In Search of the Blues by Marybeth Hamilton |Guardian Unlimited Books
(The story is that [Robert Johnson] was poisoned; an article in the British Medical Journal last year also posited Marfan’s syndrome - a connective tissue disorder, symptoms of which, such as spindly fingers and limbs, Johnson seemed to share.)

Welcome To The Tony B Fund
Tony has recently undergone emergencyheart surgery to replace his ascending aorta. He had been working in construction and was not offered health insurance, hence his extreme medical expenses are not covered. Therefore, he could use all the help he can get right now. Although Tony has not publicized his personal ordeal, we feel it’s important to make others aware of his situation.

[I found this website while surfing My Space. Thought people might want to check it out. -Jeanette]

deseretnews.com | Giving man still helping after death
By all accounts, Jordan Fowers of Farmington was a giving sort of person. He was the kind of guy who, if you were riding next to him on an airplane, he’d give you the armrest. The kind of guy who, when he went off to Mexico five years ago for an LDS mission, gave his watch away to his first companion. The kind of guy who, two years later when he came back home to Farmington, barely had the suit left on his back because he gave everything else away.
Which explains why Jordan’s family is so intent on honoring his memory by giving away something with his name on it.

Yakima Herald Republic Online: Marfan sets him apart
Lanky, long and lithe, DeVonte Combs is a basketball coach’s dream.

At least a foot taller than anyone else in his class, he’s the type of youngster sports fans watch through the years with gleeful anticipation.

He’s been told, in fact, to stop playing basketball before he gets to high school.

Athlete died from torn aorta in heart; player had recent team doctor visit
A University of Toledo basketball player had been seen by the team’s chief physician just days before his sudden collapse and death Monday of an acute heart condition.

Waterford Today Pony and trap ride raises over €7,000
A team of Ponies and Traps, led by local farrier Billy Meany, on a drive from Kilmacow to Tramore on Saturday last, managed to raise over e7,000 for research into a rare connective tissue disorder called Marfan Syndrome.

C-section, heart surgery in a day
“About eight months pregnant with twins, Mandilyn Stone felt a sharp pain in her throat as she stood at a supermarket meat counter on Aug. 20. ‘At first I tried to ignore it; I just thought everything would be OK,’ Stone said. ‘But when the pain hit my back I was really scared’

“She grabbed her neck and collapsed. …”