A Patient's Self-Advocacy Leads to an Essential Thrombocythemia Diagnosis in Her 30s

Despite initial dismissal of her concerns, a patient's persistent advocacy for her own health led to a diagnosis of essential thrombocythemia in her 30s.

Essential thrombocythemia is a type of myeloproliferative neoplasm (MPN) during which there is an overproduction of platelets.

Joy Ann Anderson, a patient with essential thrombocythemia for the past 24 years, was one of the seven MPN Heroes honored at an in-person event in December 2024. Anderson was nominated by someone who saw how much she puts towards supporting other patients with MPNs. She has provided one-on-one support over the last three years as an Imerman Angel and serves as a liaison for the MPN Research Foundation.

CURE spoke with Anderson before the event to talk about her initial diagnosis of essential thrombocythemia and the symptoms she experienced.

Transcript:

Yes, I had symptoms. I had severe headaches, and I was super fatigued. And I was only in my 30s, and I was, you know, trying to work full time and support my family. And I had kids, and it was really hard.

My PCP [primary care physician] said, “There's no way that you have this.” I was in nursing school, and I said, “I think I have essential thrombocythemia. My platelets have been super high. Here's my lab work.” And my PCP just really — I really had the push to see a hematologist oncologist.

So I finally got the order to see a hematologist oncologist, and he did a bone marrow biopsy right then and there, right in the office. And he said, “OK, we'll see, you know, if this is true.”

And six weeks later, I came back, and he said, “You were right. You have essential thrombocythemia. It's very rare for your age, but it, you know — you can just take a baby chemo pill, hydroxyurea, and come see me every six months, and, you know, normal … bloodwork and you'll be fine.”

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