Like many people, Jonno made a habit of booking an annual health check around his birthday. During one of these routine appointments in late 2022, his GP noticed some unusual blood test results. After referrals to several specialists, he met with an immunologist in January 2023, who confirmed he had CVID. Treatment began a few months later.
Looking back, Jonno can now recognise some subtle signs. Working as a teacher for 18 years, he often assumed the lingering colds he experienced were simply part of working around children during a busy winter season.
“My immunologist explained that CVID can sometimes present later in life, so in a way, I was lucky it was picked up during a routine check-up.”
Before receiving his diagnosis, Jonno faced one of the most frightening moments of his journey. After reviewing his blood test results, a haematologist told him there was a possibility he had cancer or a condition that could lead to cancer. The news left him reeling.
“For about an hour, I completely spiralled. I didn’t tell anyone.”
“Thankfully, his wife encouraged him not to jump to conclusions, while his GP reassured him there was no reason to panic. When the immunologist later confirmed it was CVID, Jonno felt an overwhelming sense of relief.
“I remember thinking, ‘Treatment for the rest of my life? I can handle that. I was simply relieved it wasn’t something even more serious, and that we finally knew what was going on.'”
Since then, Jonno has tried to focus on what he can control rather than what he can’t.
“I’d like to think I’m generally a glass-half-full kind of person. I have my moments like everyone else, but I try not to let CVID define who I am.”
Today, Jonno manages his condition with weekly subcutaneous immunoglobulin (SCIg) therapy at home. Each treatment takes around two hours, but he sees it as a small part of his week rather than something that defines his life.
“I make my CVID work around me, not the other way around.”
The treatment has made a significant difference. During his first year on SCIg, he felt like himself again, with fewer and shorter illnesses than before starting treatment.
To make weekly infusions easier, Jonno created a dedicated treatment space at home, keeping all of his equipment organised and, in the early days, relying on a simple step-by-step checklist until the routine became second nature.
Outside of managing CVID, music has always been one of Jonno’s greatest passions. Over the years he has played guitar, bass and drums in church groups and corporate function bands. After leaving teaching, he found a new way to stay connected to the performing arts by working behind the scenes in technical production at his local live theatre.
Importantly, his diagnosis hasn’t stopped him from enjoying the things he loves. While he is more mindful around people who are unwell, Jonno has chosen not to let CVID dictate how he lives.
“If someone’s sick, I’ll probably keep a bit of distance. But otherwise, I don’t really change how I live.”
He is also refreshingly open about his diagnosis. Shortly after starting treatment, Jonno even invited friends over for what he jokingly called an “infusion party”, allowing them to see what SCIg treatment involved and ask questions.
“I tell people because it’s interesting. Most people have never heard of it.”
Living in north-west Tasmania, Jonno considers himself fortunate to have accessed specialist care close to home. His first immunologist travelled regularly to a nearby hospital, and when that specialist retired, Tasmania Health arranged ongoing care with a fly-in, fly-out immunologist, allowing Jonno to continue receiving the care he needed without frequent long-distance travel.
Reflecting on his journey, Jonno credits a combination of routine health checks, good medical care and a positive outlook for helping him adjust to life with CVID. Rather than focusing on the diagnosis itself, he focuses on what treatment allows him to do.
For people who are newly diagnosed, his advice is straightforward.
“Talk to people if you need to. Don’t keep everything to yourself.”
He also recommends establishing a routine early, keeping treatment supplies organised and making therapy part of everyday life rather than something to fear.
Above all, Jonno hopes others realise that a diagnosis doesn’t have to define them.
“It’s something I do once a week, and then I get on with life. That’s the way I like it.”