Oswestry grandmother calls for more understanding of rare disease
An Oswestry grandmother with a rare lung and heart disease is backing a national awareness week to help more people understand her condition.
Nerys Jones, 68, was diagnosed with pulmonary hypertension (PH) in April of this year. She now takes life-saving medication and must spend 24 hours a day on an oxygen machine.
After suffering with breathlessness and a persistent cough for ten years, and wrongly being told she had asthma, Nerys was also diagnosed with pulmonary fibrosis and scleroderma at the same time as PH.
Her experiences have made her determined to raise awareness so that others don’t have to wait so long for treatment.
PH affects just 8,000 people in the UK. It causes high pressure in the pulmonary arteries - the blood vessels connecting the heart and lungs - and there is no cure.
Nerys is sharing her story in support of PH Awareness Week, which takes place 1-7 November and has been organised by the national charity PHA UK.
The retired counsellor, who has five grandchildren, said: “Being on oxygen 24/7 affects everything, but other people can’t really understand my PH and the effect it has on both my psychological and physical well-being. I’ve always been the one to help others and now I feel I’m a burden, especially to my husband.
“We’re having to get used to people looking at me with my oxygen. If I have the opportunity, I tell them why I’m on it as I really want to raise the profile of PH so that others get a diagnosis much quicker than I did.”
As well as breathlessness, symptoms of PH can include fatigue, blackouts, chest pain, and swelling around the ankles, arms and stomach. Medication can help people have a better quality of life, but there is no cure.
“Although my medication is starting to make breathing easier, I still panic when I cough or get out of breath from walking too far”, said Nerys. “But I’m supported totally by my lovely husband Phil and although our lives are now more restricted, we are determined to keep doing some of the activities we enjoy.”
Nerys receives treatment for her PH at the Sheffield Pulmonary Vascular Disease Unit (SPVDU), one of just nine specialist centres in the UK and Ireland.
Dr Iain Armstrong, nurse consultant at the SPVDU and chair of the PHA UK, said: “Because its symptoms are so non-specific, pulmonary hypertension can take a long time to diagnosis - and this can have a devastating impact on people’s lives. We’re grateful to Nerys for sharing her story and we hope it makes a difference.”
To find out more about pulmonary hypertension, visit www.phauk.org
