The Marfan Blog

Marfan Awareness: Paula’s Story

Jan 31, 2018 by Joe Neil


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

My Marfan Story: Home for Christmas

Dec 20, 2017 by Auburn Ponder Anderson

Auburn's late husband, Ted, with their son, Kelly.

Topics: Marfan Community, Diagnosis, Living Successfully, Quality of Life

Tips To Help You Make the Most Out Of Your Doctor Visits

Dec 11, 2017 by Jan Lynch

Topics: Quality of Life, doctors, Tips