Clare Adams, a 45-year-old woman from Widnes, has been told she may have only weeks to live after a routine holiday to Turkey led to a cascade of rare and life-threatening health conditions. Her ordeal began in the summer of 2023 when she returned from a dream trip to Marmaris with influenza. What followed was a relentless decline in her health, marked by breathlessness, heart palpitations, and a series of misdiagnoses.
Speaking with the ECHO, Clare described her initial symptoms: "I went on holiday to Turkey and caught influenza. After coming back, my breathing was really bad. I couldn't breathe at all. I couldn't take two steps without being really breathless." She ended up in hospital for a week, where she was treated for flu and sent home. Her GP initially suspected long COVID, but another doctor believed she had a problem with the right side of her heart. Yet numerous tests and scans revealed no abnormalities.
Diagnosis of Rare Lung Condition
In November 2023, Clare received a diagnosis of incurable pulmonary arterial hypertension (PAH), a condition where blood pressure in the arteries supplying the lungs is dangerously high. According to the NHS, PAH is a serious and uncommon disease that can damage the right side of the heart, with symptoms including shortness of breath. While influenza does not directly cause PAH, it can trigger dangerous lung complications. Upon hearing the diagnosis, Clare felt relief at finally knowing what was wrong, but was devastated when doctors told her she could not have children. "That was the hardest thing to deal with," she said.
Despite treatment, Clare's condition worsened over the next 18 months. Her breathing deteriorated, and her oxygen levels remained critically low. By May 2025, she was diagnosed with pulmonary veno-occlusive disease (PVOD), an even rarer and life-threatening form of pulmonary hypertension. Doctors gave her a prognosis of just weeks or months. "It was obviously a big shock to the system but I just refused point blank [to accept it]," Clare said. "I thought, I'm not letting you decide when I die."
Fighting for a Double Lung Transplant
After consulting another specialist, Clare began treatment with epoprostenol, a medication that dilates blood vessels. While unsure how much time she has left, she remains hopeful of receiving a double lung transplant. "We have had very slight improvements over the last 12 months and along with a massive one stone loss, I'm fighting my way to get a double lung transplant," she said. "I am in a wheelchair and on oxygen 24/7, having to wear a mask, as my body doesn't hold oxygen at all." Clare described her journey as a steady fight, relying on laughter, a positive mindset, and careful diet.
Turning Experience into a Children's Book
Drawing on her personal journey, Clare has channeled her experiences into a children's book titled My Auntie (subtitle: Adventures with Auntie Cra Cra). The book explores daily life with her condition and aims to shed light on the realities of living with a disability. The idea came from her nephew, who broke his kneecap playing rugby. "To keep him occupied, because he couldn't go to school, I said to him, 'come on, we'll write a book together about little things that we used to do,'" Clare explained. They first wrote Auntie Cra Cra and Frankie Go to the Park, then her nephew suggested writing about the way she looks. "It's really just a book to tell people that even though I look different, I can still do the same things as what a normal auntie can do," she said. "It hits children really hard when people are sick. My nieces and nephews have never once treated me any differently. I think the children can teach the adults sometimes." The book is available on Amazon.
