Mental Health with Marfan Syndrome (in a Post-2020 World)
When you have a lifelong condition like Marfan syndrome, your daily experience looks different...
Blog Category: Healthcare Management
Dr. Shana Kusin: Perspective from an ER Doctor who is a Marfan Mom
Marfan Awareness Month is a time to raise awareness of Marfan syndrome among the public and...
My Doctor Knew Me – He Knew Amy
In 1971, at the young age of two, Amy Grimshaw had a routine appointment with a doctor at the Army...
The Case of the Tell-Tale Toes
If you have a connective tissue condition, chances are you are probably having problems with your...
A Journey of Acceptance
The broad goal of Marfan awareness is about seeing the complete person behind the diagnosis. My...
Top Five Things I Wish I Knew Before My Aortic Surgery
When I had my open-heart surgery to repair my aorta back in the summer of 2014, I did not have...
Your Questions Answered: Medical Geneticist and Genetic Testing
If you have a connective tissue condition or are seeking an evaluation for one, you know that you...
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Together, We Can Know the Signs
and Fight for Victory