On May 5, more than 80 organizations around the world will participate in activities designed to raise awareness of this often-misdiagnosed disease and to celebrate the lives of people living with what is called pulmonary hypertension (PH), or pulmonary arterial hypertension (PAH) — a condition of high blood pressure in the lungs. PH/PAH is a chronic and life-changing disease that can lead to right heart failure if left untreated. The heart pumps blood from the right ventricle to the lungs to get oxygen.
The Centers for Disease Control and Prevention (CDC) explains that because the blood does not have to travel very far, the pressure in this side of the heart and in the artery taking blood from the right ventricle to the lungs is normally low — normally much lower than systolic or diastolic blood pressure. When the pressure in this artery gets too high, the arteries in the lungs can narrow and the blood does not flow as well as it should, resulting in less oxygen in the blood.
Pulmonary hypertension can be difficult to diagnose in a routine medical exam because the most common PH symptoms are also associated with many other conditions, and are often confused with asthma or COPD symptoms.
There is currently no cure for pulmonary hypertension, although there are different types of treatments for PH including pills, inhaled medication, medicine given through the veins under the skin, medicine to reduce swelling in the feet (diuretics), and oxygen.
However, while there are 14 medicines approved for treating adult PH patients, none of these treatments are approved for children with PH, and without treatment, the mean survivability outlook is a dismal 2.8 years, making new research an urgent matter.
World PH Day brings global attention to the importance of improving the quality of life and life expectancy of the more than 25 million people living with PH worldwide.
Phaware is devoted to making the public, news media, donors, and investors #phaware of pulmonary hypertension. Its goal is to ignite a global conversation and heighten PH awareness in unprecedented ways, with its prime directive being to capture, engage, and enable diagnosed and undiagnosed pulmonary hypertension patients, caregivers, and medical professionals by providing them with digital content focused on education, resources, and knowledge.
Phaware’s international focus and exposure provides a medium for PH research opportunities and efforts to reach an activated worldwide audience and a resource to inform and educate people worldwide through impactful and innovative methods. By harnessing digital communications and leveraging social and mass media marketing, phaware is spearheading the global PH awareness effort bent on transforming awareness of pulmonary hypertension from “rare to everywhere,” striving to make it a reality when when no PH patient goes undiagnosed or misdiagnosed.
There is also a phaware mobile app that is now deployed in more than 20 countries by thousands of active users who can follow @phaware’s social media feeds, watch #phaware videos, upload and share photos from anywhere in the world, find news of events, and donate to support PH research directly via the app.
The phaware app also features the most up-to-date disease specific daily news from those of us at BioNews Services, who are proud to be phaware collaborators disseminating news feeds from our Pulmonary Hypertension News, Lung Disease News, Pulmonary Fibrosis News, and Scleroderma News sites.
phaware App Features Include:
- Connect to phaware’s Facebook, Twitter, Instagram and Pinterest feeds;
- Watch phaware PSA’s and YouTube channel videos;
- Find local events;
- Discover and participate in PH Awareness Month and World PH Day events;
- Stay engaged and #phaware by receiving updates and notifications.
The phaware365 app is available on the Apple iTunes Store at https://itunes.apple.com/us/app/phaware365/id1052308306?mt=8 kubhApp, and on Google Play at https://play.google.com/store/apps/details?id=com.Pixofactor.PHAware
During the celebration of World PH Day, pulmonary hypertension organizations work to:
- Increase awareness and disseminate knowledge of the disease to facilitate early diagnosis. Early diagnosis is important in decreasing premature PH-related deaths.
- Promote access to specific healthcare and treatments that increase quality of life and life expectancy.
- Promote the concept of treating PH patients as a whole, which includes treating their physical, psychological, and social issues.
- Unify international criteria for the recognition of Centers of Excellence in PH.
- Promote research that will help find a cure for pulmonary hypertension.
Members of the pulmonary hypertension community worldwide also organize and take part in a variety of awareness-raising events, actions, and celebrations.
The annual observation of World PH Day began in 2012 with a program and scientific symposium held in Madrid, Spain, as the first World PH Day celebration. The day was officially endorsed by 22 patient associations, 10 rare and affiliated disease organizations, and eight scientific societies.
May 5 was originally chosen as World PH Day because it is the anniversary of the first child’s death in Spain from pulmonary hypertension as a result of toxic rapeseed oil more than 30 years ago.
This year, the May 5 date was upheld as World PH Day by popular consensus, and events are planned worldwide.
The theme of this year’s World PH Day is “Step Up for PH,” and organizers are advising supporters that there are several ways individuals or groups can join the step-up effort. Suggestions include:
Step Up and Be an Advocate:
Help make the world #phaware by sharing World PH Day’s I’m Aware That I’m Rare PSA.
Step Up and Be an Activist:
Ask your employer, medical center, or local TV or radio stations to play the “I’m Aware That I’m Rare” PSA. You can request a copy at firstname.lastname@example.org.
Step Up and Be a Fan:
Step Up and Be a Supporter:
Donate to support innovative research as scientists strive to find a cure.
Donate $25 to receive your official “I’m aware that I’m Rare” T-shirt.
Step Up with a Selfie:
Step 1: Snap a selfie on staircases around the globe — for example, the Lincoln Memorial, the “Rocky” steps in Philadelphia, even the Great Wall of China, if possible. Help make the world #phaware one step at a time.
Step 2: Decorate your photos using the phaware365 app, available on the Apple iTunes store at https://itunes.apple.com/us/app/phaware365/id1052308306?mt=8 kubhApp store, and Google Play at https://play.google.com/store/apps/details?id=com.Pixofactor.PHAware or http://www.phaware.global/phaware365 phaware.global
Step 3: Post your photos across social media. Be sure to tag them with #phaware . Challenge your friends and family to #StepUpforPH and participate.
Some useful links:
phaware website: http://www.phaware.global