For some, getting in front of a virtual crowd of 1.3 million and talking about their lives, struggles, and successes may seem scary, but for Ironmouse, that’s a typical day. This VTuber–a virtual YouTube who uses an avatar while streaming to their audience–uses her platform to bring awareness to plasma donation and her primary immunodeficiency (PI) diagnosis.
Ironmouse first spoke of her diagnosis of common variable immunodeficiency (CVID), a type of PI, early in her streaming career. She remembers getting questions about the noises people could hear in the background, which were her medical devices. Ironmouse, who uses a pseudonym and an avatar to create content, worried about how people would react to her diagnosis and hesitated to tell her followers about her illness. “I’ve always wanted people to treat me normally, but my health was affecting my streaming.”
As it turns out, talking about her illness has given her a platform to educate others on living with a rare, chronic disorder. “At the time, I think I was so worried I didn’t realize how talking about it could raise awareness,” she reflected. “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.”
Her efforts have been successful. For her Twitch anniversary, Ironmouse’s fans raised over more than $100K for the Immune Deficiency Foundation (IDF), which inspired others to follow in her footsteps.
In 2022, Ironmouse’s fellow streamer, CDawg, raised $300K for IDF through a cycleathon. CDawg, also known as Connor, and Ironmouse have become good friends over the years, and he has an understanding of her struggles and is someone Ironmouse has been able to rely on.
“I remember talking to Connor on a call when he told me about the cycleathon,” says Ironmouse. “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 IDF, 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.”
Ironmouse also raises awareness for plasma donation. “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.”
Ironmouse receives regular immunoglobulin (Ig) replacement therapy infusions. Ig provides her with the antibodies that her body would make if she didn’t have CVID. Since Ig only replaces the missing end product though, Ig replacement therapy is usually necessary for an individual’s lifetime. And since Ig can only be made from human plasma, people who rely on it also rely on plasma donors.
“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.”
During her streams, Ironmouse speaks to her 1.3 million followers about how plasma donation has benefitted her life and how plasma benefits so many others in the same way, encouraging her followers to donate. In fact, many of those followers reach out to Ironmouse with pictures and stories of their plasma donation experiences, showing her firsthand that raising awareness can make a difference.
“I have so many supporters that 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.”
Ironmouse has brought many people into the world of PI and plasma donation by talking about her experiences and providing links and information to those who are interested, truly making her a Plasma Hero. When asked about how she feels about her impact, she replied, “the fact that so many even consider donating plasma or that it encouraged them to go online and get more information is just amazing to me.”
Inspired by Ironmouse? Find a plasma donation center near you!
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