It's World PI Week — and this year, we can't wait. 🌍💖

cuddlefaerycuddlefaery
in General

This week (April 22–29) is World PI Week, the global campaign raising awareness and driving action around Primary Immunodeficiencies — a group of over 550 conditions where part of the immune system is missing or doesn't function correctly. I'm sharing this as someone who just got home from my first hospital stay for pneumonia the day before this campaign kicked off, which feels like the universe making a point 😅

The numbers are staggering:

  • An estimated 6 million people worldwide live with a Primary Immunodeficiency
  • 70–90% of them are still undiagnosed — often waiting years before anyone connects the dots
  • The average diagnostic delay is two years — though many people, myself included, go undiagnosed well into their 30s and 40s. That's decades of preventable suffering, when effective treatments already exist.

This year's campaign theme is "We Can't Wait" — shifting from raising awareness to demanding action: earlier diagnosis, better treatment access, and real policy reform.

Watch the 2-minute campaign video here

Ways you can help, wherever you are:
📢 Share the campaign — post the video, share campaign materials from worldpiweek.org, use #WorldPIWeek2026 and #WeCantWait
🩸 Donate plasma — IgG therapy, a lifesaving treatment for many with PI, is made entirely from donor plasma and can't be collected from whole blood donations. Regular plasma donors literally save lives.
🔍 Notice the patterns — do you or someone you love have a history of frequent infections, slow recovery, or just always being sick? That pattern matters. Bring it up with a doctor and ask specifically about immune testing.
🦓 Advocate for better medical education — doctors are traditionally taught "when you hear hoofbeats, think horses not zebras," meaning assume the common explanation before the rare one. But rare diseases are only rare until they're diagnosed, and patients with PI are often dismissed for years because no one looked for the zebra. Push for healthcare providers in your life and community to ask the harder questions.
💉 Support vaccines and push back on misinformation — people with PI often can't mount a full immune response even with vaccination, which means they rely on the people around them being vaccinated to stay safe. For our community, herd immunity isn't a political position — it's a medical reality. When misinformation discourages vaccination, immunocompromised people pay the price. That's not opinion, it's immunology.
🏛️ US folks: contact your representatives — let your state and federal lawmakers know that World PI Week exists, that rare immune diseases affect millions of Americans, and that coordinated access to diagnosis and treatment needs to be a healthcare priority. You can find your representatives here
🌍 Outside the US: find your regional PI organization and see what action looks like in your country

I'll share more in the comments, including my own diagnosis story. I'm always happy to answer questions and share resources!

Comments

  • cuddlefaerycuddlefaery

    As promised — my story.

    I've been advocating for PI awareness for about 8 years, since my own diagnosis in 2017. I've written letters to state and federal lawmakers, raised funds through the annual Walk for PI, and had more conversations than I can count about what it means to live with a compromised immune system. But this week hit differently — I'm writing this fresh off my first hospital stay for pneumonia and viral sepsis, home just one day before World PI Week began, and it's hard not to feel the full weight of what happens when treatment falls through the cracks.

    Here's what I told the nurse who asked about my diagnosis while I was admitted:
    I was lucky — genuinely, unusually lucky. I was 31, it was the middle of summer, and I got pneumonia. I'd always been "the sick one," prone to infections since childhood, missing school and work constantly, spending weeks after every cold fighting bronchitis or worse. For years my mother had pushed doctors for answers, and for years we got shrugged off with suggestions like more sleep, regular hand washing, and eating more vegetables — none of which address hard-coded genetics.

    It wasn't until five years after my mother's death that a temp doctor filling in for my usual GP looked at my medical history and actually saw the pattern. She'd had one previous patient with PI, and she suggested something no other doctor ever had: test my blood for antibodies. One simple blood test revealed that my IgG — the primary antibody that fights infections — was sitting around 450, when the normal range runs from 700 to 1600. Even 700 is already considered the low end of normal; I was sitting at barely half that. My body was essentially fighting every illness with half a shield, and had been my entire life.

    From there came a referral to an immunologist, a vaccine challenge to confirm my immune response was as compromised as it looked, and the beginning of IgG therapy. Within a year, my life changed in ways I hadn't thought possible. I went from being sick year-round to only getting ill seasonally, like someone with a normal immune system. For the first time in my life, I could actually fight off secondary infections without a months-long spiral into bronchitis or pneumonia. The difference was profound and immediate.

    Then the pandemic hit, plasma supply for IgG therapy tightened dramatically, and the already complex dance of coordinating Medicaid, my immunologist, and a specialty pharmacy became something I couldn't keep up with through everything else life was throwing at me. I've been off IgG therapy for over a year now — and here I am, home from the hospital.

    Getting diagnosed before 31 would have meant so much: fewer missed days of school and work, fewer rounds of antibiotics, fewer missed social events, so much less money spent on doctor's visits and OTC remedies that could never fix a genetic condition. Less shame. Less of that grinding internal narrative that I was broken, or a hypochondriac, or just not doing something enough to stay well. And my mom, who spent years pushing for answers she never got, might have had some peace before she died.

    That's why I keep talking about it.

    If any of this resonates — if you recognize this pattern in yourself or someone you love — please bring it up with a doctor and ask specifically about antibody testing. And if you want to do something this week, share the video, donate plasma, or just pass this along to someone who needs to hear it. 🤗

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