Clare Adams, a 45-year-old woman from Widnes, has been told she has only weeks to live after contracting a rare and incurable lung disease following a flu she caught on a holiday to Marmaris, Turkey, in summer 2023. She now relies on a wheelchair and 24-hour oxygen and is fighting for a double lung transplant.
Illness onset and misdiagnosis
Adams began feeling unwell after returning from her holiday, experiencing severe breathlessness and heart palpitations. She was initially hospitalised for a week and treated for influenza. After being discharged, her symptoms persisted, and doctors suspected long COVID. However, further consultations revealed potential complications affecting the right chamber of her heart, though scans showed no abnormalities.
Diagnosis of pulmonary arterial hypertension
In November 2023, Adams was diagnosed with pulmonary arterial hypertension (PAH), a condition described by the NHS as high blood pressure in the vessels supplying the lungs. PAH is a rare and serious disorder that can strain the right side of the heart. While influenza does not directly cause PAH, it can lead to severe lung complications. Adams said: 'It was more of a relief that I knew what was wrong with me. But the biggest shock was when the doctor told me that I couldn't have children.'
Deterioration and new diagnosis
Over the next 18 months, Adams' condition worsened. By May 2025, she was diagnosed with pulmonary veno-occlusive disease (PVOD), a rare and life-threatening form of pulmonary hypertension. Doctors gave her a prognosis of weeks to months. Despite the devastating news, Adams refused to accept it, saying: 'I thought, I'm not letting you decide when I die.'
Treatment and hope for transplant
After consulting a specialist, Adams began treatment with epoprostenol, a drug that dilates blood vessels. She has seen slight improvements and has lost one stone in weight. She is now fighting to qualify for a double lung transplant. Adams said: 'I am in a wheelchair and on oxygen 24/7... I didn't think I was a strong person, but to get through this last year... it's been a steady fight of continuously just laughing through everything.'
Writing a children's book
Drawing from her experience, Adams is writing a children's book titled My Auntie, which explains her condition to children. She co-wrote an earlier book with her nephew, Auntie Cra Cra and Frankie Go to the Park, after he broke his kneecap. The new book aims to show that despite her appearance, she can still do the same things as any auntie. Adams said: 'It hits children really hard when people are sick... I think the children can teach the adults sometimes.'
