Here is a humanized and expanded summary of Clare Adams’ story, crafted into six paragraphs.
Clare Adams’ life was irrevocably changed by a simple holiday. In the summer of 2023, the 45-year-old from Widnes enjoyed a trip to the sunny Turkish resort of Marmaris, only to contract the flu. While for most this would be a temporary inconvenience, for Clare, it marked the beginning of a terrifying and relentless decline. Upon returning home, she found herself grappling with a profound and debilitating breathlessness that made even taking two steps a monumental effort, accompanied by alarming heart palpitations. Despite a week-long hospital stay and numerous consultations, doctors struggled to pinpoint the cause, initially suggesting long COVID and investigating potential heart issues that frustratingly yielded normal results. For months, Clare navigated a bewildering labyrinth of uncertainty, her body failing her while answers remained elusive.
The search for clarity ended in November 2023, but the news was devastating. Clare was diagnosed with pulmonary arterial hypertension (PAH), a rare and incurable condition involving dangerously high blood pressure in the lungs’ blood vessels, which progressively damages the heart. While the flu did not directly cause her PAH, it acted as a catastrophic trigger for underlying vulnerabilities. While finding a diagnosis brought a grim sense of relief, it came with a heartbreaking personal blow: Clare learned that her condition meant she could never have children. As someone without children of her own, this revelation was a profound grief layered upon the physical struggle, forcing her to confront a future that was simultaneously narrowing and filled with immense loss.
Despite this shattering news, Clare’s fight was only intensifying. Over the following year and a half, her condition worsened relentlessly; her breathing grew more labored, and her oxygen levels plummeted dangerously low. By May 2025, she received an even more dire and specific diagnosis: pulmonary veno-occlusive disease (PVOD), an exceptionally rare and aggressive form of pulmonary hypertension. This time, doctors delivered an almost unthinkable prognosis: Clare had only a few weeks or months left to live. Faced with this stark verdict, a fierce defiance ignited within her. “I just refused point blank,” she declared. “I thought, I’m not letting you decide when I die.” This moment marked a pivotal turn from passive patient to active warrior in her own story.
Armed with this determination, Clare sought further specialist opinions and began an aggressive treatment regimen with a medication called epoprostenol, which works to widen her blood vessels. The battle, however, has exacted a heavy physical toll. Today, she is confined to a wheelchair and requires oxygen 24 hours a day, relying on a mask because her body can no longer retain oxygen on its own. Yet, amidst this immense challenge, Clare speaks of “very slight improvements” and a determined effort, including significant weight loss, to make herself a candidate for a double lung transplant—her best hope for significantly prolonging her life. She reflects on her own unexpected resilience, stating, “I wouldn’t say it’s been like a massive fight, but it’s been a steady fight of continuously just laughing through everything, working on my mindset.”
Rather than retreating from the world, Clare has channeled her journey into a powerful creative and educational force. Drawing inspiration from her young nephews and nieces, who have continued to treat her with normalcy and love despite her changing appearance, she has authored a children’s book titled My Auntie. The book gently explains what it is like to live with a disability, using her own experience to teach children that while someone may look different or use aids like a wheelchair and oxygen mask, they are still the same person inside, capable of love, fun, and shared adventures. Clare believes that children often possess a natural acceptance that adults can learn from, and her book aims to foster that understanding and compassion from a young age.
Clare Adams’ story is a poignant testament to the unpredictable and devastating turns life can take, from a holiday flu to a life-limiting diagnosis. It is equally a powerful narrative of human tenacity, the refusal to be defined by a prognosis, and the transformative power of love and purpose. In the face of a timeline measured in months, she has chosen to fight for more time, to laugh through hardship, and to leave a legacy of awareness and kindness for the children in her life and beyond. Her journey underscores a profound truth: while medicine may define the parameters of a disease, the human spirit writes its own story of courage, connection, and hope until the very last page.
