Beyond Diagnosis: Erin’s Two-Decade Battle With PAH
Co-authored by Erin Baker
December 16th, 2025
For Erin, pulmonary arterial hypertension isn’t just a diagnosis, it’s been a lifelong presence. Her journey spans family loss, her own young-adult diagnosis, two decades of treatment, and ultimately a life-saving lung transplant. Today, she uses her experience to advocate for awareness, education, and better access to care.
A Childhood Shaped by PAH
Erin’s relationship with PAH began tragically early. Her mother was diagnosed when Erin was three, and at a time with limited treatment options, deteriorated rapidly. By the age of five, Erin had lost her.
Growing up, she was reminded that because of family history, she needed regular cardiology check-ups. She maintained those appointments through her teens, a decision that would later prove crucial.
At sixteen, during a routine commute, Erin climbed a set of steep stairs and suddenly couldn’t breathe. She felt faint, frightened, and instinctively knew something was very wrong.
But when she sought help, the responses echoed what many young patients hear:
“You’re anxious.”
“You’re just unfit.”
“You’re healthy, there’s nothing to worry about.”
Her symptoms persisted. So she took matters into her own hands.
Erin visited a new GP and, knowing it might be the only way to be taken seriously, told them she was due for a cardiology review because of her family history. It worked. An echocardiogram soon confirmed what she had feared: pulmonary arterial hypertension.
Within a day, she was referred to a PAH centre of excellence in Sydney. Even with known familial risk, her diagnosis had still been delayed nine months, a time during which her condition progressed quickly.
Two Decades of Treatment and a Life-Saving Transplant
Over the next 21 years, Erin lived with PAH through evolving therapies: oral medications, intravenous treatments, and specialised monitoring. Eventually, when her lungs could no longer sustain her, she underwent a double lung transplant.
Today, she continues lifelong transplant monitoring while also staying connected to the cardiologist who supported her throughout most of her PAH journey. Her experience spans nearly every angle of the disease, diagnosis, long-term treatment, advanced therapy, and life after transplant.
Erin is a committed advocate within the Australian PAH community, which includes more than a thousand people sharing similar struggles. Delayed diagnosis is overwhelmingly common. Access to treatment is uneven across regions and systems. Education at the primary care level remains one of the community’s most urgent needs.
In her view, earlier recognition could spare patients years of progression, fear, and uncertainty. She believes deeply in the power of awareness, both among clinicians and the wider public, and in the need for better access to therapies around the world.
Her story reminds us that early action matters, specialised care matters, and patient voices matter.
