The Marfan Blog

Nicole Kramer

Nicole Kramer, of Long Island, NY, is a member of The Marfan Foundation. Her husband Mike, and daughter, Emily, have Marfan syndrome and are the inspiration for the family's relentless fundraising and awareness efforts.

Recent Posts

Nicole Kramer - My Marfan Story

May 2, 2014 by Nicole Kramer

Twelve years ago I married my husband Mike. Up until I met him, I had never heard of Marfan syndrome. My husband was diagnosed with Marfan syndrome at the age of 9. I came to understand that he had an issue with his heart that he took medication daily for and had echocardiograms to monitor his condition every six months. He was very tall and he had a pectus deformity which had been operated on when he was a child. Being a private person, I quietly read about the disorder and filed it away in the back of my mind, not wanting to talk about it or face the reality of this condition. Within a year of meeting Mike, he had two pectus surgeries. These were very painful but he fought hard and made a full recovery.

Topics: Family Planning, Volunteer, Marfan Community, Living Successfully