Blue Prints For Vital Lung Disease Awareness

29/03/2010

British charity leads the world in record attempt to boost understanding of a condition only 3% of us have heard of.

Spring 2010 sees the launch of the latest stage of an international campaign initiated and led by the Rotherham based National patient support charity, the Pulmonary Hypertension Association UK (PHA-UK) for more of us to be aware of the incurable lung condition which is marked by abnormally high blood pressure in the arteries of the lungs.  

Kissing Goodbye To PH Ignorance !! 

From May 15th 2010, 29 Pulmonary Hypertension (PH) patient groups from Auckland to Alabama will join forces with the 2000 member British charity, PHA-UK to try and get over 40,000 people to provide a Blue Lip print and set a new Guinness World Record whilst generating as much attention about the condition as possible.

Blue Lips Across The World

PHA-UK developed the Blue Lip logo in 2007, as a simple, impactful and memorable motif to grab people’s attention and get them to want to know more about the condition.  Blue lips or cyanosis, as its medically termed, can indicate the presence of PH in some people.

 The Blue Lip emblem has special meaning for two families who will feature as part of this year’s campaign, a world apart but united in grief through the loss of loved ones to PH.

 Alex McGrath from Brisbane was 6yrs old when he lost his battle with the incurable lung disease in 2009 and Amber Newby from London, Kentucky would have been 15 on the 3rd of April 2010.  Both children’s moving stories feature on the PuckerUp4PH.com campaign website and their families have dedicated themselves to using the Blue Lip logo to raise as much awareness as is possible about PH.

Blue Lips Across Britain!

Here in the UK a whole range of activities are being planned kicking off with a mass sponsored Blue Lipped trek at the ‘Just Walk’ event at Goodwood Race course.  Through the course of the campaign which runs until Halloween, people across Britain will be running, jogging, partying, disco-ing, car booting, car washing, dressing up and down in and doing just about anything legal in Blue lipstick to educate others about PH and raise cash for PHA-UK, which celebrates its tenth anniversary this year.

The Blue Lips of 2010

In 2009, PHA-UK conducted a worldwide search for someone who would lend their lips to create a new Blue Lip logo and become ‘The Blue Lips of 2010’, after over 30,000 votes were cast from Toronto to Tel Aviv for candidates from 21 countries, a lady from Puerto Rico, Luz Batista Santiago who lives with PH, won the right for her lips to be used to create a blue print to feature in a range of blue lip clothing to raise money for all participating patient groups and adorn publicity materials in over 10 languages across the globe.  

Why Raising Awareness Of PH Is Vital

Research shows that lack of awareness play a key role in delaying correct diagnosis, which can take up to three years to be achieved.  For those living with a confirmed case of this mostly invisible disabling condition, lack of understanding in the wider community can lead to feelings of isolation and despair. 

NOTES TO EDITORS:  

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).

PHA-UK Media Contacts:Bernadette Moore/Paul Pennington/Hilary Franklin/Elizabeth Hinchey media@phassociation.uk.com  020 7272 3915

About PuckerUp4PH

Is a two-year global initiative led by PHA-UK in association with 29 PH patient groups across the World.  The Blue kiss 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, United Therapeutics, GlaxoSmithKline and UK Health Matters Ltd.  For more information visit www.puckerUp4PH.com

About PH

• PH is a disease in which 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 is often mistakenly diagnosed by health professionals due to its similarities to the more common 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.

• 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.  Given the lack of understanding within the healthcare community in general on this very complex disease, the specialist centres provide beacons of information and support for patients and families affected by PH.
• Thanks to recent advances in medical understanding and treatments the future for patients with Pulmonary Hypertension is getting increasingly brighter.  However, there is still some way to go before experts fully understand the causes of Pulmonary Hypertension 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. 
• Transplantation: Only about 10 heart-lung transplants are carried out each year in the UK in pulmonary hypertensive patients. In the USA about 25% of all heart-lung transplants are done in Pulmonary Hypertension patients. Of those who receive this type, over 50% live for at least 5 more years.