Incredible Athlete with Marfan Syndrome Seeks Shot at NBA
Isaiah Austin is a name many sports fans may be unfamiliar with. In 2014 that may have been a different story. Austin played basketball at Baylor. Standing 7’1”, with surprising…
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This Drug Could Reduce The Danger of a Potentially Lethal Complication of Marfan Syndrome
According to a story from Healio, a recent study found that irbesartan, marketed under the name Avapro, can help reduce the rate at which the aorta, the largest blood vessel…
<a href="https://pixabay.com/users/Bru-nO/">Bru-nO</a> / Pixabay
Avapro Can Slow Aortic Dilation in Marfan Syndrome Patients, Study Says
According to a story from Medpage Today, a recent study found that the drug Avapro, which is commonly used to treat high blood pressure, could also slow down the dilation…
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New Device Can Successfully Treat Potentially Fatal Aortic Aneurysms
According to a story from the Tampa Bay Times, Dr. Murray Shames, who works at the Tampa General Hospital, has been finding success using a new device to treatment dangerous…
Family Spreads Awareness for Son and Others with Marfan Syndrome
The birth of a child can be one of the defining moments for a couple. It’s a milestone of that brings with it a series of surprises and lifestyle changes…
A New Gene Therapy Technique has Been Developed
Researchers at Columbia University have found a way to apply CRISPR, a tool used in gene therapies, to new types of disease, reports News Medical. The study was carried out…
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The Marfan Foundation and Backpack Health Have Teamed up to Create a New Patient Registry
According to a story from PR Newswire, The Marfan Foundation and Backpack Health are partnering so that the foundation can begin the creation of a patient registry for people affected…
Are Video Games the Future of Healthcare?
Residents think of the Central Florida healthcare system as predictable. It maintains a conservative approach to practices. That was until recently, when the industry invited local video game developers to…
16-Year-Old With Missing Chromosome Stands Tall at 7’4″
According to the New York Post, 16-year-old Brandon Marshall from the UK stands tall at a whopping 7' 4", possibly making him the tallest teen currently in the world. His…
#IKnowMarfan: February is Marfan Syndrome Awareness Month!
You'd be excused if many (or even most) of you have never heard of this rare disease - which is why it's important to observe rare disease awareness months. Marfan…
Mother and Daughter Share Potentially Fatal Invisible Illness
Every single day is life-threatening for Lauren Stribling, a 15-year-old girl suffering from a rare genetic disease called Marfan syndrome, reported Daily Mail. A simple fall, push, or physical aggression…
New Research May Have Exciting Implications for Marfan Syndrome Patients
A new study may lead to new cures and treatments for Marfan syndrome. Researchers at Johns Hopkins have made great progress testing in mice. Follow the original story here. On…
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How Many of these Celebrities with Rare Diseases Can You Name?
If you have a rare disease, chances are, sometimes you feel all alone in your experience. When you look around, there are people all over the world fighting similar battles.…
Do You Know the Signs of Marfan Syndrome? 50% of People with this Potentially Fatal Disease Don’t.
Some people with Marfan syndrome look the part. They may be unusually flexible, with long arms, legs, and fingers, and a tall, willowy build. Some patients have scoliosis, crowded teeth,…
