What a time we live in, where Marfan is all over social media – trending twice in one day – due to two famous individuals living with it!
How to tell your child they have a particular diagnosis, whether that’s Marfan syndrome, Loeys-Dietz syndrome, autism, or something else, is a question I get frequently…multiple times...
In My Hands documents two meetings of the National Marfan Foundation attended by people with Marfan syndrome, parents and physicians. We meet young children, teenagers and parents, observe annual check-ups, and listen to interviews with researchers. We listen to children talking to other children, parents sharing their experiences, and siblings helping each other.
People with Marfan syndrome who are diagnosed early and receive proper medical treatment can now live a lifespan equal to people in the general population. This is great news, right?
Well, for many people, this just brings up more questions. Living longer is great, but aging comes with all sorts of medical issues, even for those who do not have Marfan syndrome or a related disorder.
Based on an understanding of the molecular signals driving the enlargement, which eventually causes the blood vessel to rupture, a research team had offered a compelling case that the drug losartan would block or even reverse the process—and studies in mice and a small number of children with Marfan syndrome offered encouraging support. But a large clinical trial comparing losartan and another blood pressure drug that works by a different mechanism found that both slowed aortic growth just a comparable, small amount...
Vowing from the instant of his diagnosis to reap good from his misfortune, Austin has fulfilled that pledge by becoming the public face of a movement to publicize the disorder. The stakes are high: Undiagnosed Marfan syndrome typically kills the afflicted in their 40s, while treatment leads to more-or-less normal life expectancies.
When Dr. Hal Dietz arrived at Johns Hopkins University in the 1980s, he became obsessed with helping children with Marfan syndrome, a rare and often fatal disorder that can cause the aorta, the large blood vessel that carries blood from the heart, to grow and grow until it bursts.
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.
Marfan’s syndrome results from a gene mutation that leads the body to overproduce a particular protein—called transforming growth factor beta (TGF-β)—causing problems in connective tissue that holds all bodily cells, organs and tissue together. Those afflicted with Marfan’s are highly susceptible to an abnormal widening or ballooning of their arteries because the walls have been weakened.
There have been hundreds of books about Lincoln. In fact, the Library of Congress catalog suggests that a new book about Lincoln comes out every 5 days or so. If indeed Lincoln had a disease whose manifestations had much to do with his behavior, and which might explain the early deaths of his mother and of his son--seminal events in any life--then in a sense, all previous biographies are inaccurate.
So, how can parents help avoid missing a potentially life-saving diagnosis of Marfan syndrome in their athlete children? Be mindful of some key warning signs...
Turns out that Marfan’s is a disorder of the connective tissue in the body which, basically, holds us together. Kind of important stuff. Marfan’s is most often seen in very tall, slim people and one of the main discerning features in having a wing-span (fingertip to fingertip) that’s longer than your height. Flashback to my whole entire childhood when “lanky” was my identifying adjective — with some very awkward Polaroids left for posterity — but who knew I was a wingspan away from a disorder!
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.
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.
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.
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.
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.
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.
My name is Leesa. This diary will keep track of my life with Marfans. First, however, I will tell you my story.
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.
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.
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.