At 13 years old, blood tests revealed signs of an immunodeficiency, but Thomas says the results were largely dismissed. “One doctor said the test was irrelevant,” he recalls. “Another basically told my parents that I was too complex and hoped I would just go away.”
For years, Thomas and his family kept pushing for answers. His parents became his biggest advocates, fighting to have him properly investigated and treated. Eventually, they went through the private healthcare system to access further testing and try to secure immunoglobulin treatment.
In 2019, Thomas returned to Australia. In 2020, he connected with an immunologist who immediately recognised the seriousness of his condition. The immunologist then applied for IVIg treatment for his Common Variable Immunodeficiency (CVID), receiving approval within 30 minutes. A week later, he had his first infusion.
While treatment helped, the years of untreated infections had already taken a toll. Thomas was later diagnosed with bronchiectasis, likely caused by ongoing respiratory infections throughout childhood. Even now, infections remain a regular part of life. “I’d get sick every one to two weeks,” he says. “Sometimes I’d make it three weeks without an infection, and that felt like a win.”
About four years ago, Thomas transitioned to weekly SCIg treatment at home. “It’s done wonders for me,” he explains. “It’s not a cure, but I get less sick than I used to.”
Living with an immunodeficiency still impacts almost every aspect of his life. Doctors have told him he may never be able to work full-time — something that was difficult to come to terms with. “I felt quite low when I first heard that,” he says. “But eventually I accepted that this is my life, and I need to make the most of what I can do.”
Despite the challenges, Thomas continues to find purpose in the things he loves. Photography, bushwalking, and storm chasing help him connect with the world around him, especially on the days when his health allows him to get outdoors. He also volunteers with the Rural Fire Service as a fire communications dispatcher, helping manage fire operations once a fortnight.
“I can’t really live a ‘normal’ life,” he admits. “A lot of time is spent in bed because of fatigue, and I must carefully plan activities before and after volunteer shifts. But I try to make the most of things when I can.”
To reduce his risk of infection, Thomas has built careful routines into everyday life. He always wears a mask in shopping centres, avoids busy indoor spaces, shops online wherever possible, and times essential trips to quieter parts of the day. Hand sanitiser is never far away, and he’s clear with family, friends, and fellow volunteers: if you’re sick, stay home.
Alongside managing his health, Thomas has continued pursuing his goals. Although delayed by illness, he completed a Certificate III in Screen and Media and is currently studying a Certificate IV in Project Management. He has also helped build connections within the immunodeficiency community by assisting with the setup of IDFA’s Discord community.
When reflecting on what has helped him most throughout his journey, Thomas immediately points to his parents. “They’ve always advocated for my health needs, especially when I was younger, but even now,” he says. “I’ve also learned to accept that this is what life is for me. Instead of focusing on what I can’t do, I try to use my energy on the things I can do and make an impact where I can.”
For others who are newly diagnosed or in the early stages of their journey, Thomas offers simple but heartfelt advice.
“It’s a tough journey, and everyone’s experience is different. You’ll see people running marathons, and maybe you can’t do that — and that’s okay. Keeping a positive outlook where you can really helps. It can be a rollercoaster of infections, but do what you can, when you can. Even the small things matter.”