Rare disease charity shows support for transplant games

Updated: Jun 18, 2019

Written by Mary Ferguson on Wednesday the 12th of June 2019.


A charity that supports people with the rare disease pulmonary hypertension has announced its sponsorship of two major sporting events for transplant recipients.


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The Pulmonary Hypertension Association (PHA UK) is supporting this summer’s Westfield Health British Transplant Games in Newport, Wales, and the World Transplant Games in Gateshead, Newcastle.


The charity is sponsoring darts at the British Games, and Petanque – a ball game like boules – at the World Games.


The Westfield Health British Transplant Games take place from 25-28 July and the World Transplant Games – whose other sponsors include HSBC and Greggs – take place from 17-24 August.


Pulmonary hypertension (PH) is a serious lung and heart disease affecting just 7,000 people in the UK. There is no cure and if patients don’t respond to treatment, they may undergo a lung and / or heart transplant.


Iain Armstrong, chair of the PHA UK, said: “This is a golden opportunity to raise awareness of pulmonary hypertension as a disease, to encourage organ donation, and, just as importantly, to talk about transplantation as a potential treatment pathway for people with PH.


“We chose the events to sponsor carefully. Darts has a strong social element to it, with the added benefit of bringing people together, which is very important to us as a rare disease charity. And Petanque is accessible to most people, regardless of their fitness level.


“We’re really excited to be supporting both the World and British Transplant Games, which both show that what might be impossible one day, can be possible the next.”


More than 60 transplant teams from across the UK are expected to take part in the Westfield Health British Transplant Games, which are held every year. The World Transplant Games, also staged annually, will see around 3,000 competitors from 70 countries descend on Tyneside for the sporting celebration.


Dan Peel, 26, from Reading, had a double lung transplant in February 2018 after living with pulmonary hypertension. He is competing in the Westfield Health British Transplant Games for the second year; in the golf, ball throw, javelin, shot-put and 25-metre relay events.


He said: “I wanted to prove I could get back on my feet, and I’m doing it again because it’s a great chance to catch up with my team, who became like a little family.


“Also, as a second-year competitor, it’s a good chance to see those who have had their transplants after me and to encourage them that they can also do whatever they put their minds to. 


“The PHA UK sponsoring the games is an incredible opportunity to raise awareness of PH itself, as not many people know about it. It’s a great way to spread the news of what we are doing to combat it, and the journeys that people are going through and what the options are post-transplant.”


Dan Peel

Professor Paul Corris, former director of cardiopulmonary transplantation at the Freeman Hospital in Newcastle, and now medical director of the World Transplant Games, added: “Because pulmonary hypertension is a rare condition, sometimes it’s difficult to engage with the public around it. This sponsorship provides a glorious opportunity to do that, to showcase PH, and show what we can do with modern medicine to restore health and vitality.


“The ability to work with PHA UK on this is perhaps the first step in what will become a long tradition of mutual support.” 


Symptoms of PH typically involve breathlessness, fatigue, black-outs and swelling around the ankles, arms and stomach. PH affects the ability to carry out basic tasks and get around.


The PHA UK is based in Sheffield, South Yorkshire. It is the only charity in the UK dedicated to supporting the PH community; made up of patients, their family and carers, and NHS professionals.


Iain Armstrong

About pulmonary hypertension (PH)

People can be born with PH or develop it at any time and it can affect anyone, regardless of age or ethnic background. It affects more women than men.


Adult patients with PH are treated at seven specialist centres across the UK. Children with the disease are treated at Great Ormond Street Children’s Hospital in London. 


The seven adult specialist PH centres in the UK are within the Freeman Hospital in Newcastle; Golden Jubilee National Hospital in Glasgow; Royal Hallamshire Hospital in Sheffield; Papworth Hospital NHS Trust in Cambridgeshire; and Hammersmith Hospital, Royal Brompton Hospital and Royal Free Hospital in London.


For further information about pulmonary hypertension visit www.phauk.org, call the PHA UK office on 01709 761450 or e-mail office@phauk.org.


PHA UK is a registered charity no: 1120756

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