On Air

In 2010, led by the patient support charity PHA-UK(www.phassociation.uk.com) , members of the PH community from all over the world will join forces to entice 40,000 people to provide a blue lipstick print of their lips to help set a new Guinness World Record ™- and generate much needed awareness of PH an incurable lung disease that research shows only 3% have us heard about

Why Raising Awareness Of PH Is So Important:  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 make life living with it very difficult

The good news is that there are new treatments that can help people with PH live longer and with a much better quality of life.  The earlier the disease is diagnosed, the better the prognosis.

The Blue Lip Link
Blue lips or cyanosis can indicate the presence of number of conditions including PH, so, to try and boost awareness of the condition, the Blue Lip logo was developed as a simple, eye catching motif to grab people’s attention and inspire them to want to know more. Since its introduction the Blue Lip logo has attracted significant interest across the world, which for such a rare condition that struggles to get recognition, is great news!

Alongside getting individuals to Pucker Up 4 PH, volunteers across the world will be distributing information on PH and it’s non-specific symptoms (scoll downm for further information) encouraging anyone who lives with unexplained breathlessness to visit their GP.  Although PH is rare it’s estimated there are over 2 million people living with undiagnosed cases of COPD (Chronic Obstructive Pulmonary Disease).

How You Can Get Involved In The World Record Attempt
You can ‘lend your lips’ to the Guinness World Record™ attempt by downloading and printing off entry forms and posting lip prints (don't worry if you can't source blue lipstick, zinc or face paint) to the nearest participating PH organisation or to the Pucker Up 4 PH campaign office in the UK.  Full details can be found at 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.

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 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.