Personal Story

Eve P.

eve PA patients
My name is Eve and I’m 23 years old. During my senior year of college, my life became consumed by doctor’s visits and a never-ending search for why my health and energy kept declining. My skin was pale, I had dark circles under my eyes, and inexplicable stomach pain. My B12 levels were plummeting, despite taking supplements daily. When I wasn’t visiting another specialist, I slept. By the beginning of 2023, all of these problems reached new heights. I stopped counting many times I had my blood drawn when I reached 13 times in three months.
I first learned of Pernicious Anemia two years ago while doing my own research. I mentioned PA to various doctors but was told that either I was too young, it was too rare, or that I must be forgetting to take my B12 supplements. Every new doctor I saw passed me on to someone new. I was now living at home and no longer living on campus as it became too hard to juggle all my doctor’s visits from college and go to class in person with my exhaustion.

In January 2024, I found myself in the office of an infectious disease doctor – I was referred after a previous doctor thought I may have Lyme disease. Although the infectious disease doctor quickly ruled out Lyme, she was appalled by how much I was going through and how no one could seem to help me. Despite being out of her area of specialty, she listened to me and took interest in my case. I mentioned PA to her and she actually believed that it could be a possibility — she referred me to a hematologist who would be able to confirm a PA diagnosis.

It was this hematologist visit that really turned my life around. He listened to me, read other doctors’ notes, and reviewed previous test results. I remember so clearly him looking up at me and asking, “Have you ever heard of something called Pernicious Anemia?” He ordered further testing.

I remember the night the test results came back. I stared at the email with these results that confirmed that I had PA. Could it really be that all of this fighting for help and hearing from multiple top doctors that PA was too rare for me was coming to an end? There was hope, there was a path forward, and I finally KNEW the path.

I began iron infusions and B12 shots soon after, and I was amazed at how quickly my life changed. My energy came back – my need for a daily nap that had plagued my life for months was no longer an issue. On different occasions, multiple people who I had not seen in a few months all commented on how much more color I had in my skin. I had not had this much energy in years.

I saw upwards of twenty doctors in the past two years until I found the one who would listen and take me seriously. My advice for other patients, and especially young women, is to trust your knowledge of your own health, even after you get dismissed. You are your best self-advocate. Trust in yourself, do your research, and find that path forward.

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