This blog post is guest authored by Lillie, a recently diagnosed CVID patient living in the Pacific Northwest. Follow Lillie's rare disease journey on social media at @chronically.lils
Every Wednesday evening, I block out several hours to prepare and infuse a 50 mL dose of subcutaneous immunoglobulin. As someone with a lifelong fear of needles, I didn’t expect to find myself looking forward to a weekly routine that involves sticking myself in the thighs, hips, or stomach — but I do. Because it’s this medication — made from donated plasma — that not only keeps me healthy, but lets me live a full, normal life.
Two years ago, I was diagnosed with a disease called Common Variable Immunodeficiency (CVID). With this diagnosis, I learned that my body doesn’t have the key components of a functional immune system and that the condition is treatable, thanks to plasma donors. A gift from a working immune system to a broken one. These treatments can only exist because people choose to stick out their arms. The donor’s motivation doesn’t change the need, or what it enables for the recipients: Happier, healthier, and fuller lives.
After years of seeking care for persistent stomach issues, frequent infections, colds that wouldn’t go away without antibiotics, fatigue, and headaches, my health rapidly declined in early 2024. Although I had always been sicker than my peers, I was an avid runner, hiker, and rock climber. My symptoms were inconvenient but not debilitating. I had dreams of a career, a family, travel, and an active life.
But after I ran my fourth half-marathon in March 2024, the post-race day crash, which other runners will be familiar with, never went away. Weeks later, I was still exhausted. My legs felt like lead, and I could barely walk a few blocks, let alone go for a run. Struggling to keep up at work, I eventually applied for medical leave. Attending a concert or seeing friends required energy I no longer had. I felt the life I had envisioned slipping away.
But then, a single irregular test result and an immunology appointment changed everything. I had a diagnosis and a treatment — and I had hope. Within a few months, I was feeling more like myself. I went for my first few runs in the fall, then worked my way back to double digits. Now, I am back to work full-time, attending friends’ weddings, and taking vacations. My life is my own again, thanks to people I will never meet.
There is something sacred about knowing that strangers roll up their sleeves so that I can live a fulfilled life. Plasma donors are not abstract to me. Their generosity enables my future, fuels every mile I run, and sits with me each Wednesday evening.
People choose to donate plasma for many reasons. Sometimes, those reasons are financial, and sometimes they’re personal, like the people in my life who see how much it’s helped me and want to pay it forward. The motive doesn’t change the impact or the need. Conditions like mine cannot be treated without plasma donations. Without compensated donors, my medication, and the other plasma-derived therapies that help people with cancer, severe burns, liver and kidney disease, and more, would be in even shorter supply for the patients who depend on them.
Of course, I wouldn’t want this treatment if the cost is the exploitation of another person. But compensation isn’t inherently exploitative; in fact, it’s the opposite. With proper transparency and safeguards in place, why shouldn’t donors be compensated in acknowledgement of their energy and commitment?
We must not erase the humanity at the center of the plasma story: the donors who give and the patients like me who depend on that gift. Without them, my diagnosis would not have come with the possibility of a better future and a life well lived. Every Wednesday, those donors are with me, regardless of their motive, and I am profoundly grateful for each of them.
Lillie Hunnicutt lives in Seattle, WA.