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The Importance of Seeing a PCP When You Have a Rare Disease

I met my new primary care physician (PCP) on a frigid winter morning. I sat in the waiting room clutching my partner’s hand, a file folder spread open on my lap like a security blanket. My history of toxic relationships with specialists had left me exhausted, terrified, traumatized.

I was courting a new PCP and coming in hot with a big ask upfront. I wanted her help in coordinating aspects of my rare disease. I asked her to learn about my disorder and to be able to advocate on my behalf if needed.

I lost sleep the night before, rehearsing conversations with my partner and anxiously running scenarios through my head. Would she believe my pain? Would I have to prove myself to her? Would she be a willing accountability partner in my care?

I have acute hepatic porphyria (AHP), a blood disorder whose symptoms span multiple specialties, from cardiology to gastroenterology. Before involving a PCP, my hematologist managed referrals for everything he couldn’t treat. It wasn’t working. I needed a generalist, a dedicated doctor who could provide referrals and regularly think outside the porphyria box.

Fortunately, I was anxious over nothing. The appointment went well and I left with a new physician advocate in my corner. Like many living rare, I’ve learned the hard way how to ask others for help, but I hadn’t extended this request to my physicians until recently. Managing specialists, referrals, appointments, and holistic care is a full-time job for anyone with a rare disease. Fortunately, when I asked my trusted doctor to play a bigger role, she lifted a burden from my shoulders.

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