Diagnosis Vascular Ehlers-Danlos Syndrome: 5 years later

August 22nd 2013 5 years have gone by since being diagnosed with the rare affliction that is Vascular Ehlers-Danlos Syndrome. I thought about writing a long post in my usual format of an article, but to be honest, I'm pretty tired and getting through the working day is enough these days. Instead I'm going to … Continue reading Diagnosis Vascular Ehlers-Danlos Syndrome: 5 years later

When A Sneeze Can Kill: Living Life With Deadly Rare Genetic Disorder, Vascular Ehlers-Danlos Syndrome | The Ehlers Danlos Society

“Vascular Ehlers-Danlos syndrome is a killer, a silent assassin that has the power to take away a life in the blink of an eye. It is no joke. There is no cure and no real treatment. It is relentless. It doesn’t just affect individuals, but it affects whole families, often taking the lives of multiple … Continue reading When A Sneeze Can Kill: Living Life With Deadly Rare Genetic Disorder, Vascular Ehlers-Danlos Syndrome | The Ehlers Danlos Society