The more you understand about primary immunodeficiency (PI), the better you can manage it. Learn about PI diagnoses and treatment options.
Living with primary immunodeficiency (PI) can be challenging, but you’re not alone—many people with PI lead full and active lives. With the right support and resources, you can, too.
Be a hero for those with PI. Change lives by promoting primary immunodeficiency (PI) awareness and taking action in your community through advocacy, donating, volunteering, or fundraising.
Whether you’re a clinician, researcher, or an individual with primary immunodeficiency (PI), IDF has resources to help you advance the field. Get details on surveys, grants, and clinical trials.
For most people, speaking openly about a rare chronic illness to an audience of over 1.3 million strangers would be terrifying. For Ironmouse, it's become her calling.
Ironmouse is a VTuber—a virtual YouTuber who uses an animated avatar while streaming—and the most-followed English-language VTuber on Twitch, the world's leading live-streaming platform. She also holds the record as the most subscribed female streamer on Twitch. But behind the avatar is a young woman living with common variable immunodeficiency (CVID), a type of primary immunodeficiency (PI) that has profoundly shaped every chapter of her life.
Before her diagnosis, Ironmouse dreamed of becoming an opera singer. CVID had other plans. The condition left her frequently bedridden and isolated, stripping away the future she had envisioned. In a pivotal moment of adaptation, she turned to streaming—a way to connect with the world from the safety and comfort of her home.
"Diagnosis was a life-changing experience," she shared. "I was at a point in my life where I didn't know what I was going to do because I got so sick that CVID basically took everything away from me. I found streaming and VTubing, and it gave me back my life. I was able to find my voice again and find myself as a person again."
In the early days of her streaming career, viewers could hear the sounds of medical devices in the background. Ironmouse, who uses a pseudonym and avatar to create content, worried about how her audience would react if they learned the truth about her health. "I've always wanted people to treat me normally, but my health was affecting my streaming," she recalled. She hesitated—but eventually chose honesty.
What happened next surprised her. "I think I was so worried, I didn't realize how talking about it could raise awareness," she reflected. Rather than pulling away, her audience leaned in, eager to understand and support her. "I don't make my illness the main focus of my content, but I do speak about it from time to time for education and awareness and to explain why I may not be feeling my best at times."
Central to Ironmouse's advocacy is plasma donation—a cause that is deeply personal to her survival. People with CVID typically lack the ability to produce adequate antibodies, making immunoglobulin (Ig) replacement therapy a lifelong necessity. Ig, which provides the antibodies the body cannot make on its own, can only be made from human plasma, meaning patients like Ironmouse depend entirely on the generosity of plasma donors.
"Plasma is liquid gold to me," she said. "Without it, I get very sick, but with my regular infusions, I am able to live my life to the best of my ability. Plasma has given me an opportunity to live again."
During her streams, Ironmouse speaks candidly about how plasma donation has benefited her life and encourages her followers to donate. The impact has been measurable: her posts about plasma donation have reportedly led to increased donations at some centers, and "Plasma Donation" has trended on X (formerly Twitter) when she raises the topic. Many followers share photos and stories of their own donation experiences with her directly.
"I have so many supporters who have told me that they now regularly donate plasma," Ironmouse said. "It touches my heart to know that many people are taking time out of their day to save lives and help people."
The generosity Ironmouse has inspired goes beyond individual plasma donations. For her Twitch anniversary, her fans raised over $100,000 for the Immune Deficiency Foundation. That milestone inspired others to follow. In 2022, fellow streamer CDawgVA (known as Connor)—a close friend who has come to understand Ironmouse's daily struggles—raised $300,000 for IDF through a grueling cycleathon.
"I remember talking to Connor on a call when he told me about the cycleathon," Ironmouse said. "I was shocked he was going to do something that big, but happy he was donating it to charity. Then when he told me he was raising money for the Immune Deficiency Foundation, I cried so much. The fact that anyone would put their body through such rigorous exercise all to raise money for a cause that deeply impacts my life and the lives of so many others is incredible to me."
In 2024, Ironmouse's advocacy was formally recognized when she received the Plasma Hero Award at the National Conference in Chicago. Connor received the honor alongside her. Jorey Berry, President and CEO, praised both awardees: "We all benefit from their compassion and commitment to our community, and these awards represent our deep appreciation for all they've done. It's our simple way of saying thank you. We truly would not be who we are today without their help."
Berry also highlighted the unique reach of their efforts, particularly among younger audiences, noting that their influence has allowed the organization to serve its mission in ways previously unimaginable.
Ironmouse has continued to expand her advocacy in creative ways. On June 12, 2024, she released a single titled "Carry On," which serves as the credits song for the documentary film Compromised: Life Without Immunity—further weaving her story into the broader conversation about PI.
At its heart, Ironmouse's message is one of connection and hope—the same things she once desperately searched for herself. "I didn't know anything about plasma or CVID, and I struggled to find people to connect with, and it was hard to find resources that were easily available without a thorough Google search," she admitted.
"I know so many people encourage blood donation, and I want to make sure I can reach as many people as I can to tell people about living with a PI and donating plasma. I want more people to know that we are here and we need support, but I also want people to know that they are not alone."
You can be a hero for all the people who rely on plasma-based therapies. Find your local plasma donation center and start donating today.
Find a centerReceive news and helpful resources to your cell phone or inbox. You can change or cancel your subscription at any time.
The Immune Deficiency Foundation improves the diagnosis, treatment, and quality of life for every person affected by primary immunodeficiency.
We foster a community that is connected, engaged, and empowered through advocacy, education, and research.
