A Halifax grandmother with a rare disease that leaves her struggling to breathe is backing a dedicated awareness week in November.
PH Awareness Week 2017 takes place from Monday, November 20, and will encourage people to find out more about pulmonary hypertension (PH), a serious condition that causes high blood pressure in the blood vessels connecting the heart and lungs.
Carole Ayrton, 67, of Skircoat Green Road, Halifax, was diagnosed in 2010 and is backing the awareness campaign organised by the Sheffield-based charity Pulmonary Hypertension Association UK (PHA UK) by sharing her experiences of living with the rare disease – it affects just 7,000 people in the UK.
Breathlessness is one of the main symptoms of PH, resulting in the condition often being mistaken for asthma. Many people also experience fatigue, black-outs and swelling around the ankles, arms and stomach. The disease can put increasing strain on the heart and lead to irreversible damage and heart failure.
Carole said: “About three years before I was diagnosed I started getting breathless and struggling to walk, but my doctor kept saying it was asthma. When I was eventually told what it was, the consultant said the PH had progressed so much that he wasn’t sure if I would even live six weeks to see my granddaughter Izzy being born. I was devastated.”
Carole’s ongoing treatment is at the Royal Hallamshire Hospital in Sheffield, one of nine specialist PH centres in the UK. Her treatment, which in the past has included an intravenous line delivering drugs straight to her heart, is helping, but day-to-day tasks are still a struggle.
“PH is a cruel disease. Breathing is difficult and I often feel dizzy, so I can’t take a bath or shower without my husband being there. I can’t cook anymore because I don’t have the strength to lift a pan, and when I don’t feel well enough to drive, I have to use a mobility scooter. Sometimes I can’t even get dressed, brush my teeth or go to the toilet without help.”
People can be born with PH or develop it at any time and it can affect anyone, regardless of age or ethnic background, affecting more women than men. There is no cure, but a range of highly advanced treatments developed over the last 16 years has seen quality of life improve and life expectancy double to around six to seven years on average, with many living longer. A few people with PH undergo heart and lung transplants.
Carole added: “Raising awareness is really important so that people understand what PH is. It’s an invisible illness - we look well from the outside, but if you turned us inside out, it would be a different story. This isn’t high blood pressure. It’s a terminal, life-shortening illness and we will die from it unless we can find a cure.”