Research reveals emotional impact of rare lung disease
PRESS RELEASE: People living with the rare lung disease pulmonary hypertension experience high levels of isolation and anxiety and lowered self-confidence, according to new research.
A survey by the Pulmonary Hypertension Association (PHA UK) shows 92 per cent of those with the life-limiting condition feel their emotional wellbeing has been affected.
The research released for Pulmonary Hypertension Awareness Week (4-10 November) shows 53 per cent have experienced or been diagnosed with anxiety or depression, and 43 per cent feel lonely.
Over half find socialising difficult and 70 per cent say the condition has lowered their self-confidence.
Pulmonary hypertension (PH) causes high pressure in the blood vessels connecting the heart and lungs. Affecting just 7000 people in the UK, the disease can put increasing strain on the heart and lead to irreversible damage and heart failure. Symptoms include severe breathlessness, fatigue, blackouts and swelling around the ankles, arms and stomach.
Paula Hartley, 49, lives in Sheffield and was diagnosed with PH in 2017. An intravenous line – which she will have for life – pumps drugs into her body 24 hours a day, and she uses a mobility scooter to get around.
Paula, who used to be a pub landlady, said: “I feel very differently about myself now. I feel I am not the full person I was before, and I feel very lonely. I’ve had counselling and I do sometimes think, why bother? Until you’ve walked in the footsteps of someone with PH, you’re never going to know what it’s like.”
PH can affect people of all ages, including children. There is no cure, and some patients undergo heart and / or lung transplants.
Alysha Sharma, 23, is a Coventry-based student who has lived with PH since May 2018. She said: “Physically, I feel better than I did as the medication is helping. Emotionally though, I have no confidence, anxiety, and I don’t believe in myself anymore – which is really hard.”
The theme of this year’s PH Awareness week is #TogetherForPH, and the PHA UK is encouraging its members to meet with friends and family to combat loneliness and isolation.
Iain Armstrong, chair of the PHA UK, said: “The physical symptom burden of PH is huge, and now we know just how much it impacts people emotionally and mentally too. You often can’t tell someone has PH just by looking at them – so encouraging understanding of this rare, devastating condition is vital.”
The PHA UK is based in Sheffield, South Yorkshire, and works nationally to support people affected by pulmonary hypertension.
To find out more about pulmonary hypertension or get involved with PH Awareness Week visit www.phauk.org. Search #PHWeek19 and #TogetherForPH on social media.
NOTES TO EDITOR:
The report into the findings of the emotional impact survey can be accessed here
Media contact: Mary Ferguson on 01226 766900 or firstname.lastname@example.org