Lea Acres’s son Will Acres died in January 2018, aged just 22, 17 months after being diagnosed with pulmonary hypertension (PH) – a condition which causes high pressure in the blood vessels connecting the heart and lungs.
The main symptom is breathlessness, while other symptoms include fatigue, blackouts and swelling around the ankles, arms and stomach.
Like many with PH, Will was misdiagnosed with asthma as a child, and his symptoms improved as he got older, but when he was 20 he suddenly found it difficult to walk without getting extremely breathless and experiencing chest pains.
Lea said: “Will’s diagnosis came out of the blue and it was just 17 months from when he was diagnosed to when he died.
“We have been totally devastated and his death has left an abyss of grief that time doesn’t heal.
“I feel like his life was robbed and I don’t want any other family to go through this.”
After being diagnosed with PH, Will was put under the care of the Royal Brompton Hospital in London, one of just nine specialist PH centres in the UK, and he received a heart and double lung transplant at Harefield Hospital in December 2017 – but died less than five weeks later, following complications.
Lea is sharing her family’s 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 people with the condition.
Lea said: “Will would want us as a family to raise awareness of this devastating disease, which we had never heard of and lay hidden and undetected.
“It’s a silent, invisible disease and you would never have known that Will was so poorly just by looking at him.”
Will went to St James Primary School in Emsworth before completing his GCSEs and A-levels at Bishop Luffa School in Chichester.
A keen DJ, in 2017 he graduated from London’s British Institute of Modern Music with a degree in music production.
Lea added: “I remember my son as a strong, loving man who lit up a room and lived life to the full. We just miss him so much.”
Every Christmas, Lea makes ceramic robin tree decorations to raise money for the PHA UK and Will’s friends and family have raised thousands for the charity in his memory.
Iain Armstrong, chairman of the PHA UK, said: “Pulmonary hypertension is very rare and because its symptoms are so similar to more common conditions like asthma, it can take a long time to diagnose. For some, the outcome is devastating.
“We’re very grateful to Lea for sharing her family’s heart-breaking experiences and for the dedicated fundraising in Will’s memory.”
There are around 8,000 people living with PH in the UK and it can affect people of all ages, including children.
There is no cure, and some patients, like Will, undergo heart and/or lung transplants.
To find out more about pulmonary hypertension or get involved with PH Awareness Week visit www.phauk.org – or search #PHWeek20 and #RareButThere on social media.
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