Category: primary-aldosteronism

  • February 2026

    It has been a long time since I wrote here. Life was going pretty great, there was not much to report on. Until this month. So here’s the update.

    February 2026 started with hope.

    I had quietly gotten myself back into pretty good shape. Not 36-year-old PR shape (let’s not get delusional), but strong-for-50 shape. I was genuinely excited to see what I could do in the 50–54 age group at the USATF New England 4 Mile Championship on Super Bowl Sunday, February 8th.

    I was genuinely excited for the SuperSuperbowlBowl weekend. We were wearing our Patriots gear at school on Friday, February 6th. It was a good day.

    And then… I skipped.

    Yes. Skipped.

    That Friday, I was at school in a good mood. Too good of a mood, apparently. My next class — a sweet group of second graders — was lined up in the hallway. For reasons I cannot defend, I decided to skip across my classroom to greet them.

    POP.

    I felt it.
    I heard it.

    My left calf. Gastrocnemius.

    It felt like someone snapped a window shade violently upward inside my leg. I couldn’t stand. I couldn’t walk. The pain was immediate and blinding.

    But the second graders were coming in.

    So I smiled.

    “Mrs. Robie is in a little bit of pain right now, so you’re going to need to be extra independent today, okay?”

    Lie.

    I was in a lot bit of pain.

    Ten minutes later, the paraprofessional walked in and found me in tears in my chair. The nurse came. I couldn’t stand. I left school in a wheelchair — which is not how I pictured the final 48 hours before a championship race going.

    Urgent care confirmed it: torn calf muscle.

    UGH. I had a race in two days. I was so upset. However, one unexpectedly beautiful moment happened at urgent care.

    My blood pressure read 118/78. I really do not take my blood pressure anymore. I do not have a need since the successful adrenalectomy. It has been a while since I was curious enough to take a reading. But there I was — albeit injured — with perfect, medication-free blood pressure.

    That number felt like a quiet victory.

    And then, because the universe sometimes throws you a bone, a winter storm rolled in and postponed that 4 mile Championship race. Panic lifted. I didn’t have to miss it. It simply wasn’t happening.

    Silver lining.

    The knee-scooter at school on “Team USA” day.

    Crutches destroyed my armpits, so I upgraded to a knee scooter and went about life like a one-legged pirate. Brooke had a dance competition that weekend. I hobbled around on one leg feeling bad for myself, desperately wanting to run but couldn’t. But I kept telling myself:

    You’ve been through worse.

    At that time, a simple calf injury was taking me out, but I knew eventually I would be able to start running again. I had no idea what was coming next.

    (more…)

  • A quiet thank you.

    Today I learned that Marianne Leenaerts, Co-founder and CEO of the Primary Aldosteronism Foundation, passed away last week.

    In October, she was the very first person outside of my family to read Misdiagnosed for Miles. After finishing it, she emailed me and asked to meet over Zoom. I didn’t know what to expect. I had no idea she was terminally ill—maybe she didn’t either at that time. All I knew was that she cared enough to reach out and listen.

    We spoke for almost an hour, and it’s a conversation I’ll never forget. She talked about the Foundation’s mission to raise awareness, to educate the medical community, and to make accurate testing for primary aldosteronism a priority—not an afterthought. She saw the same gaps I had lived through, and she was doing something about it.

    Today I found out that she personally donated $90,000 toward PA research. I don’t know if that happened before or after our conversation, and I don’t know whether she already knew how sick she was. But either way, that gift says everything about who she was.

    She didn’t just co-found a foundation—she moved it forward with heart, urgency, and purpose.

    I feel incredibly lucky that our paths crossed, even for just one Zoom call. And I’m grateful for the work she did, and the impact she made—not just on me, but on so many others who are still out there waiting for answers.

    Rest in peace, Marianne. Thank you.