My Husband’s Unexplained Illness and PH Diagnosis

By Arianne Rohmann My active thirty-year-old husband was diagnosed with pulmonary hypertension (PH) and bi-lateral blood clots after experiencing unexplained symptoms for months… Five months later I was a 29-year-old widow raising a four- and seven-year-old on my own. (This post is the first in a three-part series by this author) January 2016 It

September 20th, 2017|

Take Action: Speak Out Against Graham-Cassidy Healthcare Proposal

Senators Lindsey Graham (R-SC) and Bill Cassidy (R-LA) introduced new legislation in mid-September to repeal and replace the Affordable Care Act (ACA). The Graham-Cassidy proposal is more far-reaching than other recent Senate proposals and could be devastating to people living with PH and other chronic health conditions. Specifically, the new proposal would: Allow insurance companies

September 20th, 2017|

Inadequate Coverage Nearly Cost Me My Life

By Sharon Thomas I had health care coverage when I found out I needed a life-saving heart and lung transplant for a disease called pulmonary hypertension. However, my insurance denied the treatment I needed. Despite the advice of my doctors, they called it experimental. I was left stranded, fighting for my life and trying

September 19th, 2017|

Announcing “The Right Heart” – New PHA Blog Series of People Living Their Best Lives With PH

Living with a serious and rare diagnosis like pulmonary hypertension (PH) can be isolating. The PHA community is a network where people can connect with others who aren't just living with PH, they're living their best lives. People with PH are more than their illness, with hopes, goals and experiences that are rich and inspiring. Friends,

September 19th, 2017|

PHA PHriends Offer Hope and Support for People With PH and Their Caregivers

PHA PHriends are patient and caregiver volunteers in the PH community who are available to offer hope and support throughout your PH journey. Under the supervision of PHA, PHriends work with people with PH and caregivers affected by PH to provide emotional support and alleviate current life challenges. Patients and caregivers can connect with a PHriend by

September 19th, 2017|

UPDATES: Resources and Information for People Affected by Hurricane Irma

Recent hurricanes and wildfires have displaced and affected many in the PHA community. PHA is working with health care professionals, industry partners, specialty pharmacies, local PH Care Centers and support groups and providing updates and disaster procedures for people on PH treatments. The following is an update from our Director of Patient and Caregiver Programs,

September 14th, 2017|

Life with PH: Emergency Preparedness and Your PH Emergency Kit

Nearly 700 members of the PHA community where affected by the devastation and flooding caused by Hurricane Harvey. For those impacted, PHA has worked with industry partners, specialty pharmacies, local PH Care Centers and support groups to compile a list of emergency contact information and disaster procedures for those on PH treatments. This information

September 7th, 2017|

FDA Approves First PH Drug for Pediatric Patients

This week, Actelion announced the first drug approved for the treatment of pediatric PH patients. Prior to the announcement, there were 14 FDA-approved PH treatments for adults living with the disease.  PHA will work with its Scientific Leadership Council to provide families with answers to questions that the new announcement could raise about the

September 7th, 2017|

CEO Update: 2017 Strategic Plan Accomplishments

Dear Community Member, Throughout the past year, the Pulmonary Hypertension Association (PHA) Board of Trustees, with input from the pulmonary hypertension (PH) Community, has developed a strategic plan for PHA that will guide our focus and activities as we work to support people living with PH, their caregivers and healthcare providers, and researchers whose

August 24th, 2017|