Help create an opportunity to learn together

I had my first major vascular event in my early 30s. Even though I knew I had vascular Ehlers-Danlos syndrome (vEDS), it was still a massive shock. I hadn’t prepared myself for an emergency event because I wasn’t very engaged with my diagnosis.Living in fearLiving with vEDS and managing my health requires a constant risk assessment: from avoiding lifting something too heavy, to knowing when to access medical care, because even the most minor and innocuous symptom can be an indication of a serious complication. It is exhausting. It can also be difficult to know when and where to go for support. I fear being perceived as just anxious if I seek medical care for concerns that turn out not to be serious. But I don’t want to dismiss symptoms that could be life threatening.The fear of spontaneous arterial and hollow organ rupture lurks constantly in the back of my…
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