The Marfan Blog

Celebrating Our Celebrities

Feb 13, 2018 by Dawn Knowles

After Michael J. Fox was diagnosed with Parkinson’s, I casually commented that the Marfan community needed a celebrity of its own to make Marfan syndrome something everyone had heard about. I was wishing for a world where my rare disorder didn’t seem so rare—or as disordered as it felt sometimes.

5 Tips for Educating your Doctor about Marfan Syndrome

Feb 6, 2018 by Wendy Molaska

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Medicine is constantly changing, and often faster than doctors can keep up. Your doctor has to periodically update her knowledge, but she also has to see hundreds of patients a week, which means she could be a little behind the times regarding new advances or the details of all illnesses and syndromes.

Topics: Diagnosis, doctors, Tips

Marfan Awareness: Paula’s Story

Jan 31, 2018 by Joe Neil

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In early January 1985, Dr. Reed Pyeritz, of Johns Hopkins Hospital in Baltimore confirmed, through body measurements and imaging tests, my wife, Paula’s, very recent suspicion that she had Marfan syndrome. Paula was thirty-three years old and had been seeing doctors for a heart condition since she was nine years old.

Cardiac Conditions Associated with Marfan Syndrome: Early Detection is Key

Jan 18, 2018 by Juan-Carlos Brenes

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Marfan syndrome can affect many parts of the body, but the most serious feature of the disorder is a cardiac condition called aortic dissection (tearing of the walls of the aorta) most commonly preceded by aortic enlargement. Left unchecked, this condition can be life-threatening.

In 2018, Resolve to Practice Self-Care

Jan 8, 2018 by Jan Lynch

When we wish others a healthy and happy new year, we do not say those words lightly. In many cases, we cherish well-being for ourselves and others because we know what it’s like when we don’t have our good health.

Topics: Quality of Life, Tips, self care