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I Have a Rare Disease, and I Am Not Sorry

I had an appointment with a new doctor this week for a routine visit, and of course my nerves were high. In preparation, I spent time updating my three-page printed medication and allergy document. I carry it with me always and it lists my physicians and their contact information, my diagnoses, the current medications I take, all of my allergies, the medications they can’t give me, and my many emergency contacts. This allows me to easily walk into any appointment or emergency room and immediately give them the information they need.

With my papers in hand, I nervously left, hoping for the best and that I would be met with understanding and openness and leave with someone who wanted to help me, to join my care team. As with most rare disease

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