National Kissing Day: July 6th 2010

12/06/2010

Charity Calls On Britain To Pucker Up 4 PH To Boost Awareness Of A Serious Lung Condition Only 3% of Us Have Heard Of

The 6th of July sees the official launch of a novel campaign created by the patient support charity, the Pulmonary Hypertension Association UK (PHA-UK), to get more of us to be aware of the incurable lung condition PH (pulmonary hypertension) which is marked by abnormally high blood pressure in the arteries of the lungs.

PHA-UK’s 2200 members will be leading 29 Pulmonary Hypertension (PH) patient groups from Auckland to Alabama to help raise awareness of PH and get over 40,000 people to provide a blue lipstick print of their lips to help set a new Guinness World Record ™ and boost the profile of the condition.

Research shows that lack of awareness of PH can delay a correct diagnosis of the condition for as much as 2-3 years. For those who have been diagnosed, public ignorance of PH can lead to feelings of despair and isolation.

For a condition where early diagnosis makes for the best prognosis, alongside getting individuals to Pucker Up 4 PH, members of PHA-UK and their counterparts across the globe will be distributing information on PH and it’s non-specific symptoms, encouraging anyone who lives with unexplained breathlessness to visit their family doctor. Although PH is rare it’s estimated there are over 2 million people living with undiagnosed cases of COPD (Chronic Obstructive Pulmonary Disease).

Paul Pennington from PHA-UK, who dreamed up the campaign explains the significance of blue lips, “Blue lips or cyanosis, as it’s medically termed, can indicate the presence of number of conditions including PH. So, as a means to boost awareness of the condition, I developed a Blue Lips logo, as a simple eye catching motif for the charity to try and grab people’s attention and inspire them to want to know more about the disease. Since its introduction the Blue Lips logo has attracted significant interest both here in the UK and across the World, which for a relatively rare condition that struggles to get recognition, is really great news!”

He added, "Thanks to the enthusiasm of PHA-UK’s supporters and the impact the Blue Lips logo has had in helping to raise awareness of the condition, it has inspired PH patient support groups and associations across the world to want to work together, which is where the idea of a Guinness World Record ™ attempt came in.”

“Such has been the enthusiasm for what we are trying to achieve, it’s been a quite task to satisfy the demand and get everything translated, printed and shipped. We have delivered several tonnes of material in 10 different languages to patient groups from Quebec to Queensland. To see it take off as it has is personally very humbling.”

Through the course of the campaign, which runs until Halloween, members of PHA-UK will be doing all they can to get as many people to Pucker Up as part of a friendly competition with other patient groups across the World. In and amongst a range of activities to get people to lend their lips to the campaign, they’ve written to every major publication and broadcaster, theatre & dance show with the hope of getting as many blue kisses as possible from members of the media. Every organisation or show taking part will be acknowledged via a roll of honour on the campaigns PuckerUp4PH.com website.

Supporters of the PuckerUp4PH campaign will be running, jogging, partying, disco-ing, car booting, car washing, dressing up and down in blue and doing just about anything legal in blue lipstick to educate others about Pulmonary Hypertension and raise cash for PHA-UK, which celebrates its tenth anniversary this year.

NOTES TO EDITORS:
Representatives from PHA-UK are available to talk about PH and the campaign. We also have a number of case studies willing to be interviewed.

The Pulmonary Hypertension Association UK (PHA-UK) charity number 1120756 www.phassociation.uk.com provides support, understanding, and information for everyone whose life is touched by Pulmonary Hypertension (PH).

About PuckerUp4PH: PuckerUp4PH is a two-year global initiative led by PHA-UK in association with 29 PH patient groups across the World. The Blue Lip Logo was developed in 2007 by Paul Pennington for PHA-UK to try and help improve awareness of the condition both in the public consciousness and within the healthcare profession. The PuckerUp4PH campaign is supported by unrestricted educational grants from Bayer, Pfizer, Actelion and United Therapeutics. For more information visit www.PuckerUp4PH.com

About PH
PH is a rare disease in which the blood pressure in the arteries in the lungs elevates putting pressure on the heart, 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 is often mistakenly diagnosed by health professionals due to its similarities to asthma and research by PHA-UK shows almost three quarters of PH sufferers have had to see more than three doctors and just over a quarter have had to visit over five before being correctly diagnosed.
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.
PH can often lead to heart failure and can be a standalone condition or associated with other diseases.

Untreated, PH has a worse prognosis than many forms of cancer.
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.
While there are currently approximately 4,000 diagnosed PH sufferers across the UK, the lack of awareness amongst healthcare professionals and frequent misdiagnosis make the actual number of sufferers harder to estimate.
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.
While there are currently approximately 4,000 diagnosed PH sufferers across the UK, the lack of awareness amongst healthcare professionals and frequent misdiagnosis make the actual number of sufferers harder to estimate.
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.
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.
There are 8 PH specialist centres in the UK, (4 in London including Great Ormond Street with the remainder situated in Glasgow, Sheffield, Newcastle and Cambridgeshire) which provide expert diagnosis, treatment and management for PH patients.

Thanks to recent advances in medical understanding and treatments the future for patients with PH is getting increasingly brighter. However, there is still some way to go before experts fully understand the causes of PH and formulate drugs to combat or even prevent the disease developing.

Transplantation: Heart-lung transplantation is a procedure offered to patients when all possible medical treatments have proved to be ineffective. Therefore patients who receive transplants are very ill, and have a very poor quality of life. This treatment is limited by the availability of organs that are good enough to use. Sadly this means that some patients die whilst waiting for suitable organs.