For Holly, life has always involved balancing big dreams with the realities of living with a primary immunodeficiency. Diagnosed with hypogammaglobulinemia in her early twenties, she has spent nearly half her life navigating treatments, hospital stays, and learning how to advocate for herself. But above all, she has made a conscious decision not to let her condition define who she is.
Growing up, Holly was frequently unwell. Coming from a low socioeconomic background, recurring illnesses were often accepted as just another part of life.
“It was always just, ‘Holly’s got this’ or ‘Holly’s got that.’ I’d need course after course of antibiotics, but no one really investigated why.”
It wasn’t until she was 15 that she began seeing a respiratory specialist. After leaving home at 17 and moving to Brisbane, her health continued to decline. Repeated emergency department visits for asthma flare-ups and pneumonia eventually led one doctor to order a simple blood test. A week later, Holly received the phone call that would change her life.
“I was told I needed to see a haematologist straight away, and suddenly I was having regular immunoglobulin infusions.”
Despite receiving treatment, Holly admits she didn’t fully understand the seriousness of her diagnosis at first.
“No one really explained that it was lifelong. In my early twenties, I’d miss infusions because I didn’t realise how important they were.”
Those missed treatments came at a cost, with repeated hospital admissions reinforcing just how vital regular therapy was.
“I realised pretty quickly that a few hours having treatment was much better than spending days in hospital.”
For many years, Holly received intravenous immunoglobulin (IVIg) treatment in hospital every three weeks, losing almost an entire day to each infusion. More recently, switching to subcutaneous immunoglobulin (SCIg) has transformed her routine.
“Now I do my treatment at home on a Sunday afternoon while listening to an audiobook. It fits into my life instead of my life revolving around it.”
Although treatment has become easier, navigating the healthcare system continues to present challenges. Because Holly rarely develops a fever and has developed a high tolerance for pain after years of illness, serious medical conditions have sometimes been overlooked in emergency departments.
“I’ve been sent home from emergency on several occasions because I didn’t have a fever or didn’t seem to be in enough pain,” Holly says. “Later, it turned out I had serious conditions like pneumonia, urinary tract infections and, more recently, pulmonary embolisms.”
These experiences have reinforced the importance of listening to her own body and advocating for appropriate investigations when something doesn’t feel right.
“You know your own body better than anyone. Learning to advocate for yourself is one of the biggest things. Use the resources available through IDFA if you need them.”
Managing day-to-day life means staying organised, pacing herself, and recognising that doing too much while she’s feeling well often leads to setbacks.
“When I’m feeling good, I want to do everything. Then I end up sick for weeks. I’m learning that pacing myself isn’t giving up—it’s looking after myself.”
Working with a psychologist has helped Holly shift her mindset from frustration to acceptance.
“I’ve learnt to accept that this is my life. It might look different to other people’s lives, but I’m making it work.”
Despite the challenges, Holly refuses to let immunodeficiency limit her ambitions. She works part-time in early childhood education—a role she loves despite the increased exposure to illness—and has built a life filled with creativity and adventure.
A passionate Harry Potter fan, Holly has a loyal companion in her cat, Neville, who rarely leaves her side, especially when she’s unwell.
“He’s amazing. When I’m sick, he’ll just curl up next to me. He’s very supportive.”
She also loves snorkelling on the Great Barrier Reef and plans a cruise whenever she can, although travel insurance and health considerations often make overseas holidays difficult.
“Travel is important to me, so I make it work however I can.”
When she’s not travelling, Holly keeps busy with a variety of hobbies that allow her to slow down and recharge. Recently, she’s discovered Harry Potter LEGO, finding it both relaxing and rewarding.
“It forces me to sit still, and you get that little dopamine hit when you’ve finished building something.”
Writing has also become an important outlet. Alongside working in a kindergarten, Holly has written articles published in The Big Issue and is currently working on a book.
“I want my life to have lots of different parts. I’m not just my job, and I’m not just my immunodeficiency.”
Holly has also become passionate about sharing her experiences to help others. She has delivered presentations at patient events and hospitals, using her story to raise awareness and encourage others living with immunodeficiency.
Her advice for anyone newly diagnosed is simple but powerful.
“Don’t let your illness rule your life. It’s something you’re living with, but it doesn’t have to define who you are.”
Through resilience, self-advocacy and a determination to embrace every opportunity, Holly continues to build a life that’s full of purpose, creativity and connection—proving that while immunodeficiency is part of her story, it is far from the whole story.