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An Ode to the Spoon Theory and Online Communities
Chronically ill and disabled individuals utilize the internet to find community and spread...
Blog Category: Awareness
We See Your Impact
Awareness. In the Marfan world, this is one word with infinite meanings and feelings attached....
Mental Health with Marfan Syndrome (in a Post-2020 World)
When you have a lifelong condition like Marfan syndrome, your daily experience looks different...
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...
Awareness is Never Losing Someone Unexpectedly to Marfan Syndrome
Helping Others Helps Me I share because I care. It sounds simple, but it is so true. There are...
Carrying His Heart in Mine
My story about Marfan syndrome mostly takes a back seat to my husband's. He's the one with Marfan,...
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...
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