Marfan Syndrome

Know the signs. Fight for victory - The Marfan Foundation

Marfan Syndrome
Marfan Syndrome

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It's So Personal: Marfan Syndrome

My wife has Marfan Syndrome, a condition that (among other things) leaves people susceptible to sudden dilation or aneurysm of the aorta. It weakens the walls of the aorta with no symptoms, followed sometimes by catastrophic tearing. When it tears, there's an 80% of death - 65% en Davinciroute to the hospital, 15% at the hospital - and only 20% survive through aortic graft surgery. Pregnancy greatly exacerbates that risk.

We knew about the dangers during my wife's first pregnancy, so she had repeated measurements of the aorta. It got a little bigger, but never to the danger zone. Our daughter was delivered by C-section without serious complications. Once the aorta gets bigger, however,…

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Resources

  It's So Personal: Marfan Syndrome

My wife has Marfan Syndrome, a condition that (among other things) leaves people susceptible to sudden dilation or aneurysm of the aorta. It weakens the walls of the aorta with no symptoms, followed sometimes by catastrophic tearing.

The Marfan Foundation

Before our founding in 1981, Marfan syndrome was largely unknown or misunderstood, but our tireless efforts have led to many life-changing advances in our fight for victory over Marfan syndrome and related disorders. We tirelessly advance the research for treatments that save lives and dramatically enhance quality of life for affected people.

Aortic Dissection, Heart & Cardiovascular Health with Marfan Syndrome

Cardiovascular health is so important to all of us. I blog here about healthy cardiovascular diets, low impact exercise, zen, hobbies, art & health metamorphosis. I have Marfan Syndrome, a connective tissue disorder & want to share about how to live a satisfied & healthy life - even when physically limited with a seriously damaged cardiovascular system. Amazing physical & emotional metamorphosis is possible! Join me on the journey.

Living with Marfan's Syndrome

I am a Filipina college student and I have Marfan's Syndrome. This blog is intended to connect with and to provide information and support to others with Marfan's, especially to other Pinoys.

Marfan Life and me

This is my story on how i came to be diagnosed with Marfan Syndrome at the age of 37. The diagnosis made sense to why i grew up with many illnesses.

Musings of a Marfan Mom

This blog is about my personal experience with Marfan, how having Marfan affects my roles of wife and mother, and my general thoughts on motherhood.

The Marfan Diary

My name is Leesa. This diary will keep track of my life with Marfans. First, however, I will tell you my story.

CDC

Some complications of Marfan syndrome can be very serious, like an aneurysm (bulge) of the aorta, the main artery that takes blood away from the heart. An aortic aneurysm can cause the walls of the aorta to tear apart (dissect) and blood to leak in the space created by the tear. An aortic aneurysm can be life threatening.

NHS

Marfan syndrome is a disorder of the body's connective tissues, a group of tissues that maintain the structure of the body and support internal organs and other tissues.

NORD

The specific symptoms of Marfan syndrome vary greatly from person to person. Some individuals will develop only a few mild or isolated symptoms; others will develop more serious complications.

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