PHA Guide Aims to Help Newly Diagnosed Patients, Their Caregivers and Family

Teresa Carvalho, MS avatar

by Teresa Carvalho, MS |

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Pulmonary Hypertension Association PHA Guide

The Pulmonary Hypertension Association (PHA) has published a guide that aims to help people recently diagnosed with pulmonary hypertension (PH), as well as their family and caregivers, in better managing the chronic lung disease.

The 60-page book, titled “Navigating Pulmonary Hypertension: A Guide for Newly Diagnosed Patients,” covers several relevant topics, including diagnosis, treatments, symptoms, and quality of life, according to an association press release.

PH can impact every aspect of patients’ daily routines, whether they are newly diagnosed or have lived with it for many years. The disease also has wide-ranging impacts on patients’ caregivers and family members.

When individuals are diagnosed, they may feel overwhelmed and lost, as they don’t know what to expect or how to move forward. Thus, providing them with information and support as they adjust to their new life is an important step to take, and one of the PHA’s main goals.

For this reason, the organization — the world’s oldest and largest dedicated to PH — has recently published a book in which patients may find answers, support, and hope to help them in the first weeks, months, and years following their PH diagnosis.

The guide provides an overview of the PH journey and is written in ways that are practical and patient-friendly. Tips to get ready for the first appointment — in the form of checklists and questions to ask to healthcare providers — or how to find local support groups and clinical trials are among the information provided.

Postcards with information about the book are being distributed among healthcare providers, so they may then pass them along to newly diagnosed patients, or anyone else who may benefit. Of note, those postcards can be ordered or viewed by physicians who are registered in the PHA’s medical membership networks, a membership portal that encompasses two networks intended for PH experts.

The PHA also is encouraging patients to help spread the word on the new book by reaching out through their social networks to those newly diagnosed with the disease.

This new guide joins other PHA publications also aimed at empowering patients and caregivers, including the “Survival Guide,” “Roadmap to Hope” and “Understanding Pulmonary Hypertension.” Although these books are no longer published, many of the themes they addressed will now be covered by the new “Navigating PH” guide, PHA says.

Those interested in the new guide can fill out a form to order a free copy of the printed version, or download it to the computer. It also can be read online. Copies also may be requested by sending an e-mail to [email protected], or calling to 301-565-3004.