Llandysul mother backs rare disease awareness week

A Llandysul mother with a rare lung disease is backing a national awareness week to help more people understand her condition.

Anna Bowen, 43, is a widowed mother-of-three and has pulmonary hypertension (PH), a life-limiting lung condition which affects just 8000 people in the UK.

It causes high pressure in the pulmonary arteries – the blood vessels connecting the heart and lungs – and leaves Anna short of breath and with low energy. She has to have drugs pumped directly into her chest 24 hours a day and uses a mobility scooter during days out.

If you passed Anna in the street you wouldn’t know anything was wrong, and she is calling for more understanding of people with invisible illnesses like hers.

She said: “You can’t tell I am ill just by looking at me. I have a blue badge and when I park in disabled bays, I get so many looks; I can feel the daggers in my back, and I hate it. People tut and walk away and although I feel like I should justify myself, I don’t like confrontation. It’s very hard.”

Anna is sharing her story in support of PH Awareness Week, which takes place November 2-8 and has been organised by the Pulmonary Hypertension Association(PHA UK), a national charity that supports adults and children with the condition.

Symptoms of PH include severe breathlessness, fatigue, blackouts and swelling around the ankles, arms and stomach. There is no cure.

Anna was diagnosed out of the blue in 2014, while training for the Admiral Swansea Bay 10k. What she thought was a chest infection turned out to be pulmonary hypertension and she is now treated by a specialist hospital in London.

Despite being on advanced drug therapy, Anna feels breathless and tight-chested every day and battles ongoing fatigue.

She has three children aged 19, seven and nine and the youngest two live with her. Despite the challenges of her pulmonary hypertension she must care for them alone, after losing her husband to brain cancer in March – just days before lockdown began.

Anna credits the community in Llandysul for helping her get through the last few months.

“The neighbours have been so supportive” she said, “I wouldn’t want to live anywhere else. I’ve had food parcels, loo roll deliveries, everything. People brought us anything we needed; we really had great support and that did get us through it.

But I do worry about the future. It’s scary being on my own and I will do anything to keep myself alive for the kids.”

Anna is now determined to raise awareness of pulmonary hypertension and help people understand that not all disabilities are visible.

She added: “The onset of my PH was so sudden, and no-one should take their health for granted. It can change in an instant, and my family know that more than most.

“If you talk about cancer, everyone knows what it is. But when you mention pulmonary hypertension, people don’t know what you’re talking about – even though it can affect anyone, of any age.”

Iain Armstrong, chair of the PHA UK, said: “Pulmonary hypertension is extremely rare and because its symptoms are so similar to more common conditions like asthma, it can take a long time to diagnose.

“Having PH comes with many challenges and we hear too many stories of people feeling ‘judged’ for not looking ill. We’re grateful to Anna for sharing her story and we hope it makes a difference.”

To find out more about pulmonary hypertension or get involved with PH Awareness Week visit www.phauk.org. Search #PHWeek20 and #RareButThere on social media.