How the PAH Initiative is Helping Patients

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by BNS Staff |

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November has come to an end and Pulmonary Hypertension (PH) Awareness Month now waits another year to come back around for the general public. For PH patients and caregivers familiarity with the condition is not only confined to one month, of course. There is a continuous need for medical care, support, and resources.

Outside of our community, pulmonary hypertension is still not very well known, despite our collective efforts. PH is a condition with a broad category of different types that all have one thing in common—high blood pressure in the lungs. One type of PH is pulmonary arterial hypertension (PAH). With PAH, the high blood pressure in the lungs is caused by the blood vessels in the lungs becoming more narrow, which causes the heart to work significantly harder to pump blood to the lungs. As a rare disease that dramatically impacts people’s lives, it’s critical to bring more awareness to PAH along with support and resources to those affected by it all year long.

Started in 2018 by United Therapeutics as part of its commitment to the PAH community, the PAH Initiative helps advance patient care by providing inspiration and knowledge based on science and research in PAH today.

How the PAH Initiative Makes a Difference

The PAH Initiative strives to educate patients, healthcare professionals, and caregivers with the most up-to-date information, resources, and research to improve their knowledge and understanding of PAH. The PAH Initiative also inspires patients and caregivers to stay engaged and motivated by sharing other patients’ hopeful stories, helping patients connect with each other, and enabling the PAH community to understand how recent research can put patients and their doctors in more control of their future.

The PAH Initiative wants to be an accessible resource for the PAH community wherever PAH patients and caregivers are looking for helpful information. Some of the main ways to connect with the PAH Initiative are featured below.

PAHInitiative.com

PAHInitiative.com is one of the go-to hubs for information about PAH. The website contains motivational and educational resources, including:

  • Current disease information
  • Informative videos
  • Hopeful and inspiring patient stories
  • Speaker resources for patient educators
  • Downloadable patient resources in English and Spanish

The PAH Initiative understands that navigating life with PAH is more than just understanding the disease. That’s why the PAH Initiative website recently expanded to include new information and content about living with PAH, such as fitness videos designed for PAH patients, information about exercise and nutritional choices, insights about self-care and well-being, and other daily PAH topics. To learn more about living with PAH, visit the Living with PAH section on the PAH Initiative website.

PAH Today Magazine

PAH Today is the new magazine from the PAH Initiative. Full of inspiration and insights based on science and research, PAH Today also features everyday tips from other patients in addition to motivational patient stories.  Users can download a digital copy of PAH Today, here, or subscribe to the PAH Initiative Email Newsletter to receive a free print copy.

The PAH Initiative Email Newsletter

The PAH Initiative email newsletter is easy to join and allows subscribers to:

  • Be among the first to learn about new educational resources
  • Find out when PAH events are scheduled
  • Get inspired by others who are moving forward on their PAH journey
  • Receive helpful items and resources, such as a phone carrying bag for use during exercise and a print copy of PAH Today

The PAH Initiative Social Media Communities

The PAH Initiative allows PAH patients and caregivers to be a part of a community that cares. By following the PAH Initiative Instagram and Facebook pages, patients and caregivers can learn more about PAH over time and connect with others in the PAH community.

PAH Today National Broadcast

With all of the recent advances in PAH care, PAH patients and caregivers need to stay informed to ensure they are doing all they can to keep on the best path. One way to do this is by watching PAH Today National Broadcast Series, which features on-demand broadcasts such as:

  • Functional Class: One Piece of the PAH Puzzle: How doctors use Functional Class (FC) and other assessments to help predict five-year survival
  • Choosing a Healthier PAH Lifestyle: How daily lifestyle choices affect health, and the science behind nutrition, exercise, and other lifestyle choices often recommended by healthcare providers
  • Echo: Getting to the Heart of the Matter: How PAH experts now use echo to find changes in the heart early and take action before symptoms get worse

Previous broadcast topics about PAH disease basics, risk status, and treatment pathways can be found on the Events page on the PAH Initiative website.

PHpal App

PHpal is an app for PAH patients and care partners that provides ways to be better informed and more in control of the condition. With features and content like a self-assessment for 6-minute walk distance, mood, and functional class, as well as a symptom tracker, videos, articles, podcasts, and educational games, PHpal serves as an all-in-one mobile solution for PAH content. PHpal is free to download on the Apple and Google Play stores.

Stay Informed with the PAH Initiative

Take the initiative! PAH knowledge gives you PAH power.

Our understanding of PAH continues to evolve, making it essential to have a dependable resource for information. Whether through the PAH Initiative email newsletter or Facebook and Instagram communities, the PAH Initiative gives you various ways to be a part of a united PAH community, helping you stay informed and connected all year round!

 

This article was sponsored by the PAH Initiative, where knowledge meets inspiration. The PAH Initiative, sponsored by United Therapeutics, is dedicated to advancing patient care in pulmonary arterial hypertension.