Guest Post: Maia’s CVID Story

Hi! I’m Maia.

You might be wondering where my journey with CVID began, so here is the first time I’m telling my story.

I was born underweight and unwell, with doctors struggling to pinpoint what was wrong with me. I don’t remember much about my diagnosis, but I do remember feeling different from my friends—taking inhalers for asthma, staying inside at lunchtime to drink juice, and struggling to keep up on school sports days. Despite it all, I adored my pediatrician (who snuck me chocolates!) and actually enjoyed getting my blood tests—I felt so brave!

In 2012, we discovered that my sister and I had no IgA, and my mum was diagnosed with CVID. She started infusions that same week. Me? I didn’t begin treatment until my IgG levels dropped low enough in 2016—at just 12 years old. Looking back, treatment became my normal. Thursday evenings were strictly off-limits for plans with friends, and overseas school trips were out of the question. But that was life as I knew it. It kept me alive, and that was all that mattered.

As I grew older, the reality of my condition hit harder. Constant infections, university absences, and relentless fatigue left me drained. CVID is an invisible illness, which is why advocacy and awareness are so important to me. While the physical toll—chronic infections, exhaustion, rashes, and constant injections—is life-changing, the mental impact is often overlooked. As I transitioned into adulthood, I realized the emotional weight of my condition. I struggled with attachment issues and anxiety. My mum became my safe haven, and without her, I felt lost—making it difficult for me to feel secure on my own.

More recently, I’ve battled health anxiety. There is still so much unknown about PID, and that uncertainty fuels my fear of what the future holds. The mental issues of this condition can sometimes be debilitating. CVID is far more than just “frequent colds”—it affects every aspect of my life. That’s why I’m currently conducting research for my undergraduate project on the psychological effects of PID. My hope is that this work will contribute to improved treatments and greater understanding.

For those living with CVID, every day is a fight to keep our bodies functioning at a “normal” level. We are tired. We are unwell. But we push forward, doing everything we can to stay healthy. Sometimes, we can’t keep up—and that’s okay. I’ve learned that I have to slow down to prevent my body from burning out.

If you have a family member, friend, or colleague with a primary immune deficiency, please be patient. Listen to their needs. Learn their limits. And above all, be kind.

So next time you hear hoofbeats, think zebra. 🦓