Sep 26 2011
The Pulmonary Hypertension Association Europe (PHA EU) has launched ‘Time Matters’ a new campaign which encourages people with Pulmonary Hypertension (PH) and their friends and family to share hopes and dreams for the future in order to raise awareness of this deadly and rapidly progressive condition. By logging on to the website http://phtimematters.org and posting an entry, everybody can help the patient association take a step towards increased awareness and understanding of this devastating condition.
PH is a life-threatening condition which affects the lungs and heart.[1],[2] It is characterized by high blood pressure in the arteries of the lungs and can kill.2,[3] PH can severely restrict a person’s ability to carry out normal daily activities, walking short distances, climbing the stairs and getting dressed can become extremely difficult.3,[4],[5],[6] The mortality rate of one of the more rare forms of PH, pulmonary arterial hypertension (PAH, WHO class I diagnostic classification), can be higher than that of certain forms of cancer including breast and colorectal cancer.[7],[8] PAH can be idiopathic (meaning the cause is unknown) or heritable (genetically determined). PAH is associated with a number of diseases and conditions, including connective tissue diseases, congenital heart defects, portal hypertension, HIV Infection (AIDS), medications, drug use, appetite suppressants and other factors.[9]
As a rapidly progressive and irreversible condition, time matters for people with PH. Diagnosis can be delayed by up to two years as the symptoms of PH are often non specific and can be similar to those associated with other common conditions such as asthma. Life expectancy for people with PH is short so once they are diagnosed accurately, it is imperative that they are given appropriate treatment early, as any function lost can never be regained. Although the prognosis for patients with PH has improved in recent years[10] currently available pharmacological treatments are only approved to treat one of the five types of PH, pulmonary arterial hypertension (PAH), and all treatments have significant limitations, so there is a high unmet medical need for more effective therapies.[11] Currently, patients across Europe do not have equal access to approved treatments for PH and surgery (including lung transplant), and patients often face the stark reality of having to travel to another country in order to receive the treatment they need.
PHA EU are asking people with PH, their friends and families, as well as the general public, to share their hopes and dreams for the future, with regards to PH and for sufferers to offer advice for others who are affected by PH. Contributors will also be invited to upload an accompanying photograph of themselves to the site. These contributions will be used to build ‘The PHaces of PH’, an electronic collage designed to spell out the word ‘Time’, to demonstrate the reality of those affected and those showing support for the fight against PH.
Pisana Ferrari, Vice President PHA EU said, “We are absolutely delighted to have launched the Time Matters campaign which will be distributed globally by all of our important member associations. We know how important time is for people with PH, a diagnosis of PH can be frightening both for the person diagnosed, their families and friends and we want to make them feel part of a community and to know that they have the support of others in a similar situation to them. Often the hopes and goals of people with PH are things that others who don’t suffer from the condition might take for granted, such as being able to tend to the garden, take a child to the bathroom or even tie their own shoe laces. With the support of the PH community and the wider public we can begin to place PH on the radar of healthcare professionals in order to achieve early diagnosis and improve the outlook for patients.”
About Pulmonary Hypertension Association Europe (PHA EU)
Pulmonary Hypertension Association Europe (PHA Europe) is an umbrella association of national patient organizations working in the field of pulmonary hypertension. The primary objective of PHA Europe is to establish a narrow cooperation between the members, the European institutions, international organizations and public institutions worldwide. For more information about PHA Europe, please visit: http://phaeurope.org/
About PH
PH is a disorder in which the pressure in the pulmonary arteries is above normal. People with PH develop a markedly decreased exercise tolerance and reduced quality of life. Due to non-specific symptoms, PH is often misdiagnosed or diagnosis is delayed. The most common symptoms of PH include shortness of breath, fatigue, dizziness and fainting, all of which are worsened by exertion. PH is a severe and life-threatening disease that can lead to heart failure and death. According to the clinical classification of PH (Dana Point), there are five different types of PH based on underlying causes, which are: pulmonary arterial hypertension (PAH), pulmonary hypertension owing to left heart disease (e.g. PH-LVD), pulmonary hypertension owing to lung disease and/or hypoxemia (e.g. PH-COPD or PH-ILD), chronic thromboembolic pulmonary hypertension (CTEPH) and pulmonary hypertension with unclear multifactorial mechanisms.
About the Time Matters campaign
The Time Matters campaign is led by the PHA EU, supported by its members in over 20 different countries.
The campaign is sponsored by an unrestricted grant from Bayer HealthCare Pharmaceuticals. For information on Bayer HealthCare Pharmaceuticals, please refer to www.bayerpharma.com.
[1] Rosenkranz, S. Pulmonary hypertension:current diagnosis and treatment. Clin Res Cardiol 96:527–541 (2007)
[2] Macchia, A et al. A meta-analysis of trials of pulmonary hypertension: A clinical condition looking for drugs and research methodology. Am Heart J 2007;153:1037-47
[3] McLaughlin, VV et al. ACCF/AHA 2009 expert consensus document on pulmonary hypertension. J Am Coll Cardiol 2009 28;53(17):1573-619.
[4] Chen, H et al. Health-related Quality of Life and Patient-reported Outcomes in Pulmonary Arterial Hypertension. Proc Am Thorac Soc 2008;5:623-630.
[5] Verdecchia, A et al. Recent cancer survival in Europe: a 2000-02 period analysis of EUROCARE-4 data. Lancet Oncol 2007;8:784–96.
[6] PuckerUp4PH website http://www.puckerup4ph.com/about-ph.php Accessed: August 2011
[7] McKenna, S et al. The Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR): A measure of health-related quality of life and quality of life for patients with pulmonary hypertension. Quality of life Research 2006;15:103-115.
[8] Ruiz-Cano, M et al. Comparison of Baseline Characteristics and Survival between Patients with Idiopathic and Connective Tissue Disease-related Pulmonary Arterial Hypertension. J Heart Lung Transplant 2009;28:621-627.
[9] Simonneau, Gérald et al. Updated Clinical Classification of Pulmonary Hypertension. Journal of the American College of Cardiology 2009; 54:43-54
[10] Galiè, N et al. A meta-analysis of randomized controlled trials in pulmonary arterial hypertension. Eur Heart J 2009;30:394-403.
[11] Girgis, RE. Emerging drugs for pulmonary hypertension. Expert Opin Emerg Drugs 2010; 15:71–85.
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