Vascular Ehlers-Danlos Syndrome. Say that three times fast. It’s the name of the condition I carry deep in my genetic code. Maybe you carry the weight of a hard-to-say, even-harder-to-explain rare disease. Maybe your diagnosis isn’t even named yet and you’re in a frustrating cycle of doctors’ visits, tests, and endless waiting. With all of the appointments and daily management of our disease, we can easily let these identifications become our identity.

Our rare disease can take up a lot of our time, but it must not take preeminence in our hearts.

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