MJ

20 years ago, MJ Tooey walked into a South Carolina emergency room expecting treatment for an ear infection. Instead, she walked out with questions sparked by a lab report showing abnormally high platelets.

What followed was a patient journey marked by milestones, pivots, and determination.

After sharing her platelet count with her primary care physician, MJ was eventually referred to a myeloproliferative neoplasm (MPN) specialist. She was ultimately diagnosed with essential thrombocythemia (ET). Thanks to her resolve, MJ stayed informed, advocated for herself, and built a trusted care team.

Over the next 2 decades, MJ’s unpredictable journey included progress and set backs. Each treatment offered potential but came with consequences, and each shift required MJ to weigh medical risk against emotional fatigue. “When I hit 1,000,000 platelets at the age of 60, I went on hydroxyurea,” she describes. “This treatment caused a painful ankle ulcer that required 6 months of weekly wound care to heal.” Thanks to her wound care team, she was able to schedule her wound specialist appointments around her work schedule even during COVID.

Interferon brought new hope and then new harm, triggering autoimmune hepatitis that impacted her liver 2 years into treatment. Living with a disease defined by uncertainty, resilience became MJ’s most consistent prescription.

For MJ, one of the greatest sources of relief has been her care team — particularly the collaborative relationship she’s built with her MPN specialist. As a longtime academic health sciences librarian, MJ is not only comfortable diving into medical literature; she thrives on it. Rather than showing up to her appointments with questions alone, she comes armed with research articles, clinical trials, and emerging treatment updates. “Every time I go in, I bring four or five new articles for the team,” she says. “They’ve even noted in my medical chart that I provide resources for the hematology fellows.”

That mutual respect helped ease what could have been a far more isolating experience. Her MPN specialist, Dr. Maria Baer, welcomes MJ’s research contributions, calling her an “educator” and MJ in turn values her physician’s conservative, measured approach. “I appreciate that she listens, and she appreciates that I’m engaged,” MJ shares. “It makes a big difference when you feel like you’re being treated as an equal in your own care.”

Even when MJ hesitated to start ruxolitinib, her specialist didn’t push. Instead of pressure, her doctor offered space — answering questions, outlining risks, and waiting for MJ to come to her decision in her own time. That level of patience and partnership became a cornerstone of MJ’s care experience. “I don’t even know why I resisted it,” MJ admits. “Now, three years later, I can’t believe I waited.”

What MJ built over the past 2 decades goes beyond a care plan — it’s a trusted collaborative. Her MPN specialist, primary care physician, and even her endocrinologist are all in sync, fully aware of her diagnosis and treatment. “They all know what’s going on with me and what meds I’m on,” MJ says. “That’s been amazing.” This level of connection makes her endocrinologist’s upcoming retirement especially difficult. “It’s going to be hard to rebuild a relationship like this, but I know I’ll have to,” MJ shares.

In navigating the uncertainty of a largely invisible disease, she found both clarity and community, helping to lighten the emotional load. “Honestly, aside from the disease itself, I haven’t felt a lot of stress, and I know that’s rare,” MJ reflects. “That’s because of the people around me.”

MJ continues to show up — to her appointments, to her care team, and to the broader MPN community. As a member of MPN Research Foundation’s Patient Impact Council, she supports research, advocates for patient empowerment, and offers a listening ear to others. Through it all, she remains grounded by a singular goal: to make the journey easier for those who come next.