Student in drive to raise awareness of rare disease

PRESS RELEASE: A student from Emsworth has launched an egg-themed Facebook challenge to raise awareness of the rare disease that took the life of her brother.

Will Acres died last month from pulmonary hypertension (PH), a serious condition affecting the heart and lungs, at the age of just 22.  His sister Annabelle, 21, a student at Cambridge University, has devised the ‘egg head challenge’ to promote awareness of the disease and raise money for the Pulmonary Hypertension Association (PHA UK).

Inspired by a video of her brother using his forehead to crack an egg taped to his wardrobe door, Annabelle is encouraging people to film their own ‘egg smashes’ and post the video on Facebook, along with information about PH. Participants are also encouraged to nominate someone else to take on the challenge and make a text donation to the PHA UK when they upload their video, along with the hashtag #PHAEggHeadChallenge.

Pulmonary hypertension (PH) is an incurable disease that causes high blood pressure in the blood vessels connecting the heart and lungs. PH is very rare, affecting just 7,000 people in the UK.

Will, who lived with his family in Emsworth, was diagnosed in the summer of 2016, after getting chest pains and struggling to keep up with friends. He was under the care of the Royal Brompton Hospital in London, one of just seven specialist PH centres in the UK, and received a heart and double lung transplant at Harefield Hospital on 29 December 2017. He died less than five weeks later, on 1 February.

Annabelle said: “I’ve been quite overwhelmed by the response to the Facebook challenge and I think Will would have found it all hilarious. He was fun, loving, and kind-hearted, with an amazing determination to make the most out of life, especially after his diagnosis.

“PH is such a rare disease, with devastating consequences. Will’s courage became very apparent as he became more ill and Mum, Dad and I did all that we could to make him realise how proud we were of him. We were also blown away by the respect that so many of Will’s friends had for him, as the response to the Facebook challenge shows.”

A memorial service held for Will on 28 February at St. James Church in Emsworth was attended by more than 500 people. Donations from the service raised £2,000, which has been split between the Pulmonary Hypertension Association (PHA UK) and the Royal Brompton and Harefield Hospitals Charity. Friends and family are also taking on various other fundraising initiatives in his memory.

Annabelle said: “I think my family are still in disbelief that Will has passed, but we find comfort in knowing that in his short life, he became such an inspiration to so many people – his memorial service was a testament to this.

“PH is such a complex condition and there are many causes and symptoms, which are often mistaken for more common conditions like asthma. Will spent a lot of time thinking that some of his breathing problems were asthma-related but if he had known about his PH earlier, his heart would perhaps not have gotten to the point of irreversible damage as quickly as it did.”

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, he graduated last year from London’s British Institute of Modern Music with a degree in music production.

Iain Armstrong, Chair of the PHA UK said: “Pulmonary hypertension can affect anyone, and it is tragic that such a young man was taken by this disease. We’re really grateful to Annabelle, her family, and all of Will’s friends for everything they are doing to raise awareness of PH in his memory.”

The Pulmonary Hypertension Association (PHA UK) is based in Sheffield and is the only charity in the UK dedicated to supporting the PH community made up of patients, their family and carers and NHS professionals.

Search #PHAEggHeadChallenge on Facebook to see some of the videos made in Will’s memory.

Symptoms of PH typically involve breathlessness, fatigue, black-outs and swelling around the ankles, arms and stomach.

 

Last medically reviewed: March, 2018 • March, 2021