The mouse effect: Streaming sensation Ironmouse's journey with CVID

08/12/2024

Before her diagnosis with common variable immune deficiency (CVID), Ironmouse dreamed of becoming an opera singer. However, the debilitating effects of CVID often left her bedridden and isolated. In a pivotal shift, she turned to streaming, allowing her to connect with people from the comfort of her home. Initially hesitant to discuss her illness for fear of misunderstanding, Ironmouse found it increasingly difficult to conceal. To her surprise, her audience listened intently and yearned to learn more, a response she never anticipated.

Ironmouse has since made remarkable strides in raising awareness about the critical need for plasma donations and related issues. Using her platform as a VTuber with over one million followers, she has become a powerful advocate for primary immunodeficiency (PI) awareness and plasma donation. As the most followed English-language VTuber on Twitch, as well as the record holder for the most subscribed female streamer on Twitch, her impact has been profound. During her streams, she educates her vast audience about PI, describes immunoglobulin (Ig) replacement therapy, and encourages her followers to donate plasma for vital treatments.

This is one of the many reasons Ironmouse received the Plasma Hero award at the recent 2024 PI Conference in Chicago. Jorey Berry, President and CEO of the Immune Deficiency Foundation (IDF), praised Ironmouse and fellow awardee and streamer Connor (CDawgVA), stating, "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 emphasized the global reach of their efforts, particularly among younger generations, noting that their influence has allowed IDF to serve its mission in unprecedented ways.

Ironmouse's motivation to use her platform for awareness stems from her personal experience with CVID. She shared, "Diagnosis was a life-changing experience. 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." Though initially fearful of speaking about her condition, she eventually found the courage to share her story, viewing it as the least she could do to help others.

The impact of Ironmouse's advocacy extends beyond her streams. Her tweets about plasma donation have reportedly led to increased donations at some plasma centers. “Plasma Donation” also becomes a trending topic on X when she posts about it. Furthermore, on June 12, 2024, she released a single titled "Carry On," which serves as the credits song for the IDF documentary "Compromised: Life without immunity," further amplifying her message.

Ironmouse's journey from a bedridden patient to a streaming sensation and advocate for PI awareness is nothing short of remarkable. Her ability to transform her struggles into a powerful platform for change has not only raised awareness but also provided hope and support for others facing similar challenges.

Looking to the future, Ironmouse hopes that her story will inspire others. She envisions a world where "Another Ironmouse knows they're not weird, but there's help out there and they can find a way to live their best life just like me." Through her continued efforts, she remains committed to spreading awareness, encouraging plasma donation, and supporting the PI community.

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