Judy has always been someone who finds joy in connection. Whether it’s spending time with family, supporting friends, reading with her book group, crafting, or collecting children’s literature, relationships have always been at the heart of her life.

“I’ve always been a colourful person,” she says with a smile. “I find colour uplifting and wore bright colours every day when I was teaching. That’s who I am.”

Growing up, Judy was healthy and active. She loved sport, particularly netball, and even represented Victoria when she was 19. Nothing suggested that chronic illness would one day become such a significant part of her life.

That changed in her mid-twenties.

After developing a severe viral illness in 1994, Judy was diagnosed with costochondritis, leaving her with ongoing chest pain. Later that year she developed pneumonia, and over the following months her health continued to decline. Not long after marrying her husband, Giovanni, she was diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), followed by fibromyalgia.

For many years, Judy believed these diagnoses explained the decline in her health.

“As I look back now, I think the chronic fatigue syndrome masked what else was happening.”

Despite her health challenges, Judy was determined to continue teaching at primary school. She adjusted her role from classroom teaching to literacy support, carefully managing her energy and using leave when needed without drawing attention to her health. At a later point, Judy returned to classroom teaching again.

“Going to work gave me something beyond my illness. I’d come home exhausted and spend much of my time resting, but teaching gave me purpose.”

Over time, new symptoms began to emerge. Persistent sinus infections became more frequent, lasting longer and requiring repeated courses of antibiotics. Fortunately, Judy’s long-time GP, Dr Simon Wong, wasn’t satisfied with simply treating each infection.

“Simon wanted to get to the bottom of why this kept happening. He changed my life.”

Dr Wong arranged further investigations and referred Judy to an immunologist. In 2015, at the age of 50, she was diagnosed with Common Variable Immunodeficiency (CVID).

Looking back, there had been clues much earlier. During fertility investigations and multiple rounds of IVF, blood tests had shown abnormalities in her immunoglobulin levels, but the findings were overshadowed by the immediate focus on fertility treatment.

Judy and Giovanni endured ten rounds of IVF over many years. Although fertilisation was often successful, they were unable to carry a pregnancy to term.

“Not having children is something we still live with. You learn to live alongside it, but you don’t move on from it.”

Family remains central to Judy’s life, and she speaks with enormous gratitude for the support of her husband and her Mum and Dad throughout every challenge.

Following her CVID diagnosis, Judy received immunoglobulin treatment within a week. She initially commenced IVIg but experienced significant side effects, leading her medical team to transition her to weekly subcutaneous immunoglobulin (SCIg) therapy with Hizentra. She was among the first patients at her hospital, The Alfred in Melbourne, to be trained to administer treatment at home.

“My nurse, Eddie, taught me everything I needed to know. SCIg suits me much better because the weekly doses are spread out four times over the month, so I don’t experience the highs and lows I did with one IVIg treatment every month.”

Each week, Judy sets aside an evening for her infusion, often reading or watching television while she treats herself at home. It has become part of her routine and gives her greater independence.

Judy credits her healthcare team for helping her navigate life with CVID.

“My GP, immunologist Dr Julian Bosco, and the rest of my team communicate so well. I always feel listened to, and they explain things clearly. That makes such a difference. Recently, my GP referred me to a pain specialist, who is helping me with managing pain and a strengthening program.”

Alongside her specialist care, Judy also works with a naturopath/nutritionist, physiotherapist and psychologist as part of a holistic approach to supporting her overall wellbeing.

Prior to the Covid pandemic, Judy was teaching part time at a primary school and had also begun sessional work in educating teachers at university. The pandemic brought with it a shift in Judy’s teaching settings – changing from face to face to online. Judy no longer teaches face to face and only does online sessional work with universities. “At the end of the 2019 school year, I didn’t know when I walked out of school that it would become my last teaching day in primary schools.”

Living with an immunodeficiency still requires careful planning. Judy continues to wear a mask in indoor public spaces, chooses outdoor cafés where possible, and often avoids crowded shopping centres in favour of open-air streets. Giovanni also wears a mask to protect Judy. Family celebrations sometimes require extra planning, including booking separate accommodation to reduce infection risk.

“There are times when I’d love to stay with everyone, but I know what keeps me safest. I’ve learnt it’s okay to make those choices, to be as well as I can be and reduce those multiple courses of antibiotics.”

This year, Judy and Giovanni are preparing for a long-awaited trip to visit family in Italy. While excited, she’s also realistic about the challenges of travelling away from her healthcare team, and managing daily fatigue and pain.

“We’re pacing the whole trip, hiring a car, limiting public transport and building in daily rest. I want to enjoy it while looking after my health.”

For Judy, connection continues to be one of the most important parts of living well. She believes finding others who truly understand life with an immunodeficiency can make an enormous difference.

“Even with all the support, you can sometimes feel alone because no one really understands what it’s like. Connecting with others living with immunodeficiency reminds you that you’re not alone.”

The recent opportunity to co-write the IDFA picture book ‘What Does Brave Feel Like?’ with Javeria Khan was a very special experience for Judy. “It feels so good to help children and families navigate treatment experiences, and to give back to IDFA and the support they’re giving me.”

Her advice for anyone still searching for answers is simple.

“If something doesn’t feel right, keep searching. Listen to yourself and trust your instincts.”

The motto that guides Judy every day is one she hopes others can embrace too: “Choose to focus on what you can do, rather than what you can’t.”