30 People From Across The Globe Vie To ‘Lend Their Lips' And Boost Awareness Of Virtually Unheard Of Deadly Lung Condition
In little over two months just under 1000 of the 10,000 visitors from across the world to the Pulmonary Hypertension (PH) awareness raising website puckerup4ph.com have spared a photographic kiss of themselves in support of the PH community, with the hope that their lips would be selected to front a major global awareness campaign in 2010 to help defeat widespread ignorance about the lung condition. A shortlist of 30 ‘puckerers' from across the globe will now do battle via an online vote at http://www.puckerup4ph.com/ from today up until the 9th of October to determine who will become ‘the blue lips of 2010'.
Paul Pennington spokesperson for the patient support charity the Pulmonary Hypertension Association UK (PHA-UK), who are leading this campaign in tandem with PH patient groups in 16 countries across the world said, "Blue lips or cyanosis as it's medically termed is a symptom experienced by some patients with Pulmonary Hypertension (PH) as a result of low levels of oxygen in their blood. Many people with PH don't exhibit any outward signs of the disease so we developed the blue kiss logo in 2007 to try and help improve awareness of the condition both in the public consciousness and within the healthcare profession. Lack of awareness of the disease is believed to contribute to delays in diagnosing PH, preventing people gaining access to the specialised care and treatments they need. It also fuels the feelings of isolation that many diagnosed PH patients endure."
4 English (Mark Boldy Northampton , Rob Scott Northampton , Lizzie Tomlinson Hull & Stephanie Kennedy Bolton ) , 1 Scot (Nicola Jane McCulloch Dunfermline ) , 2 Welsh (Hazel Roberts living in Luton & Rebekah Bevan Newport ) , 1 Argentinean (Antonella Cassini) , 3 Australians (Chloe McGrath, Mitchell McGlynn & Joan Godber) , 3 Canadians (Sylvane Tessier, Lorretta Chu, Tina Gillis) 1 Colombian (Paul Morales) , 1 Israeli (Sharon Fadduck) , 2 Italians (Ludovico Bianchi, Maria Pia Proia) , 1 Japanese (Takahiro Chiba) , 1 Mexican (Penelope Vasquez) , 1 Peruvian (Ana Cecilia Rodriguez Valencia) , 1 Puerto Rican (Luz Batista Santiago) , 1 Spaniard (Victor Carazo) , 4 US citizens (Moncia Sifuentes, Elizabeth Cherry, Diane Ramirez and Martin Fields and 3 people from Venezuela (Migdalia Denis, Rafael Coll, Enio Maiale) make up the final thirty who go forward into the public online vote.
The winning lips will be used to replace the current blue kiss logo as part of a major international PH awareness campaign including a Guinness World record attempt in 2010.
Paul Pennington from PHA-UK said, ‘We're absolutely delighted with the response and support for this campaign from around the world, we might have only scratched the surface of the estimated 97% of the public who haven't the first idea what Pulmonary Hypertension is, but it's a really encouraging start and together with our friends at PH patient groups across the world we are confident we can make a difference".
He added, " Although incurable, there are effective and relatively new treatments that can help people with PH if they are diagnosed early in the disease's progression. Due to its none specific symptoms, PH can often be misdiagnosed as Asthma and many patients can endure a bewildering two to three year wait, seeing up to 5 doctors in the process, before being correctly diagnosed and gaining access to the specialised care and attention they need. With correct treatment and a faster diagnosis almost two thirds of PH patients will survive longer than 5 years, however, sadly if not treated, approximately half of PH patients' die within two years."
NOTES TO EDITORS
Representatives of PH patient support organisations across the world are available to talk about Pulmonary Hypertension and why it is so important to raise awareness of the condition. They will also be able to put journalists in contact with short listed contenders for the ‘blue lips of 2010 competition' and people living with PH who are prepared to talk about the condition and the impact it has on their lives.
The Pulmonary Hypertension Association UK (PHA- UK) (charity number 1082613) provides support, understanding and information for everyone whose life is touched by Pulmonary Hypertension. In the autumn of 2009, the charity celebrates a decade of achievement for people with PH including being the only patient support group to stop the Governments Drugs Watchdog NICE removing life saving therapies from Doctor's armoury of treatments for this fastest growing area of medicine. To find out more about PHA-UK: visit http://www.phassociation.uk.com/
International "Pucker Up 4 PH" Partner Associations: Working with PHA-UK supporting this campaign are PH patient associations from the USA, Mexico, Columbia, Puerto Rico, Argentina, Peru, Venezuela, Spain, Australia, Brazil, Canada, Germany, Ireland, Israel, Italy and Japan
This global puckerup4ph.com campaign has received unrestricted educational grant funding from Pfizer, Actelion, Bayer Schering Pharma, United Therapeutics and GlaxoSmithKline
PULMONARY HYPERTENSION (PH) BACKGROUNDER
- PH is a disease where the blood pressure in the arteries in the lungs elevates putting pressure on the heart and reducing the amount of oxygen that is able to reach the tissues of the body causing breathlessness and exhaustion. This can significantly impact the sufferer's ability to lead a normal life. PH can often lead to heart failure and can be a standalone condition or associated with other diseases.
- PH is often mistakenly diagnosed due to its similarities to asthma. PHA-UK research shows the average time for PH to be correctly diagnosed across the UK is two years with 1 in 5 patients having to wait significantly longer.
With correct treatment and a faster diagnosis almost two thirds of PH patients will survive longer than 5 years, however if not treated, approximately half of PH patients die within two years.
- PH affects people of all ages including young children. It is twice as common in women as men and the commonest age at presentation is 40 - 50 years old.
- There are currently approximately 4,000 diagnosed PH sufferers across the UK and it's estimated that there are a further 4,000 who are undiagnosed.
People with PH experience a range of symptoms, the most common of which are breathlessness, dizziness, fainting, chest pain, palpitations and increased lethargy. These symptoms are described as "non-specific" which means it is quite difficult to diagnose.
- There are 8 PH specialist centres in the UK, (4 in London, Great Ormond Street, Hammersmith, Royal Brompton, Royal Free with the remainder situated in Glasgow, Sheffield, Newcastle and Cambridgeshire) which provide expert diagnosis, treatment and management for PH patients.
- Although there is no cure, there are effective and relatively new treatments that can help sufferers if they are diagnosed early in the disease progression.