Updates

April 18, 2019April 18, 2019
Heart’s Ventricular Mass on MRI May Predict Risk of Death in PAH, Study Says

The heart’s ventricular mass may be an early prognostic biomarker for predicting the risk of heart failure and death in people with pulmonary arterial hypertension ... Read more
April 17, 2019April 17, 2019
Team PHenomenal Hope Gears Up for 6th Annual 5K Fundraiser

As they have for the past five years, members of the pulmonary hypertension (PH) community are preparing to participate in PHenomenal Hope 5K, an event ... Read more
April 15, 2019April 15, 2019
PH Patients in UK Experience Diagnosis Delay, Heavy Disease Burden, Survey Says

Patients with pulmonary hypertension (PH) living in the U.K. experience delayed diagnosis, which has important implications for their financial and emotional status, according to ... Read more
April 12, 2019
10 Exercise Myths and Truths: Advice from a Respiratory Specialist

Myth 1: If you can’t run with the big dogs, stay on the porch. Truth: In the words of the late great Dr. Martin ... Read more
April 12, 2019April 10, 2019
The ‘Pains’ of Being in Severe Pain

“Rate your pain on a scale of 1 to 10, 10 being the worst you ever felt.” If I have learned one thing over ... Read more

News, PH News

Mallinckrodt’s INOmax Approved in Australia for Adults with Perioperative PH and Heart Surgery
April 12, 2019April 12, 2019
The health regulatory agency for Australia has approved Mallinckrodt Pharmaceuticals‘ INOmax (nitric oxide) gas for inhalation as ...
News, PAH News

United Therapeutics Ends Clinical Development of Esuberaprost as Add-on Therapy for PAH
April 11, 2019April 11, 2019
United Therapeutics announced it has ended its Phase 3 BEAT trial testing esuberaprost as an ...
News

FDA Agrees to Change Study of Bellerophon’s INOpulse for PH-ILD Patients
April 10, 2019
The U.S. Food and Drug Administration (FDA) has agreed to change the ongoing Phase 2b study evaluating INOpulse ...
Columns, Life After PH – A Column By Kathleen Sheffer

Normal Lung Pressure Adds Pressure to Live to the Fullest
April 10, 2019April 9, 2019
My anxiety skyrocketed last month without any medical triggers. I celebrate my 26th birthday ...
News, PH News

Vasodilator Combo Can Treat PH-associated POEMS Syndrome, Report Says
April 8, 2019April 18, 2019
Combined therapy with Revatio (sildenafil) and Opsumit (macitentan) was effective in a patient diagnosed with ...
News, PAH News, PH News

LRP1 Protein Levels Linked to Blood Vessel Remodeling in PH, Study Suggests
April 5, 2019April 5, 2019
Increased levels of a protein called LRP1 may lead to blood vessel remodeling in ...

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Systemic Hypertension a Predictor of PAH in Lupus Patients, Retrospective Study Finds
April 4, 2019April 18, 2019
Systemic hypertension is an independent predictor in rare cases of pulmonary arterial hypertension (PAH) ...
Researchers ID Genetic Factor That Predisposes Carriers of Specific Mutation to Familial PAH
April 3, 2019April 3, 2019
Variations in a gene called FIGN predispose to familial or heritable pulmonary arterial hypertension (FPAH) in ...
Increased Production of Nestin Protein Involved in PAH Development, Study Suggests
April 1, 2019April 1, 2019
Please Don’t Tell Me ‘It Could Be Worse’
March 29, 2019March 27, 2019
Certain Patients with Sarcoidosis-associated PH May Benefit from PH-specific Treatment, Real-world Study Suggests
March 29, 2019March 29, 2019
Sandoz Launches Treprostinil Injection, First Remodulin Generic, in the US for PAH Treatment
March 28, 2019April 18, 2019

Oxygen Manifesto, Part 1: Advice from 3 Respiratory Specialists
March 27, 2019March 29, 2019
Note: This is the first part of a two-part series written in collaboration with ...
Bcl-xL Is a Potential New Therapeutic Target for PAH, Researchers Say
March 27, 2019April 4, 2019
Congenital Heart Defects May Lead to PH, Other Complications Later in Life, Expert Says
March 25, 2019April 4, 2019
Realizing My Worth in Relationships
March 22, 2019March 20, 2019

Polysplenia Syndrome a Risk Factor for Early PH, Study Suggests
March 22, 2019March 28, 2019
People with polysplenia syndrome — a condition characterized by a “left-sidedness” on both sides ...
Resverlogix Obtains Funding for Phase 2 Trial Testing Apabetalone in PAH
March 21, 2019March 27, 2019
Opsumit Has Potential to Improve Right Ventricle Function in PAH Patients, Phase 4 Data Show
March 20, 2019March 26, 2019

News, PAH News

Cell Therapies Show Potential as Treatment for PAH, Review Finds
March 18, 2019March 26, 2019
Regenerative cell therapy can induce significant improvements in key clinical features of pulmonary arterial ...
News

Defining Five Main Categories of Pulmonary Wellness: A Rehab Specialist’s Advice
March 15, 2019March 22, 2019
“The whole is greater than the sum of its parts.” — Aristotle In today’s healthcare ...
News, PAH News

Estrogen May Help Protect Against Heart Changes in PAH, Animal Study Suggests
March 15, 2019March 22, 2019
Estrogen, one of the major female sex hormones, has a protective effect in pulmonary ...
Columns, Recharged and Rewired - a Column by Brittany Foster

PH Life Feels Like Residing in a Waiting Room
March 15, 2019March 19, 2019
I get anxious just thinking about what it’s like sitting in a waiting room ...
News, PAH News

Liquidia’s LIQ861 Safe and Effective in PAH Patients, Phase 3 Trial Suggests
March 14, 2019March 19, 2019
A Phase 3 clinical trial testing LIQ861 met its primary objective, showing that the investigational inhaled ...
News

Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn
March 14, 2019March 20, 2019
Madeline Collin, a 24-year-old activist with Gaucher disease, worries that patients like her will ...
News, PH News

1st Participant Enrolled in Phase 2 Trial of Levosimendan for PH Patients with Heart Failure
March 13, 2019March 13, 2019
The first participant has been enrolled in a Phase 2 trial testing the investigational ...
News

Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist
March 12, 2019March 12, 2019
With each new advance in medicine comes ethical dilemmas, from fertility treatments and newborn ...
News, PAH News

Study Reveals Possible Reason for Women’s Higher Risk of PAH
March 11, 2019March 11, 2019
Women’s pulmonary artery muscle cells produce more of a signal molecule called hypoxia-inducible factor ...
Columns, Recharged and Rewired - a Column by Brittany Foster

With PH, I Choose to Be Cautiously Optimistic
March 8, 2019March 15, 2019
Black-and-white thinking is something that I have mastered for the majority of my life. ...
News

Spouses of PH Patients Feel Insecure, Want to be More Involved in Partner’s Care, Study Finds
March 8, 2019March 15, 2019
Spouses of people with pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) report ...
News, PH News

Study Identifies Factors that May Increase PH Risk After Atrial Septal Defect Repair
March 7, 2019March 13, 2019
High pulmonary pressure, cardiac medication use, and poor heart function are all risk factors ...
CTEPH News, News, PAH News, PH News

Transition from PDE5i to Adempas Without Washout Period Deemed Safe
March 6, 2019March 12, 2019
Transition from phosphodiesterase-5 inhibitors (PDE5i) — such as United Therapeutics’ Adcirca (taladafil) and Pfizer‘s Revatio ...
Columns, Life After PH – A Column By Kathleen Sheffer

Skiing Put My Life with PH in a New Light
March 6, 2019March 12, 2019
President’s Day weekend was supposed to be monumental. I intended to write a feel-good ...
News

NIH Rare Disease Day Highlights Joint Networks Advancing Array of Research
March 5, 2019
Rare diseases affect about 30 million Americans — roughly the same number as those ...

March 2, 2018March 1, 2018

Being Patient Is Difficult when You’re a Patient

Columns, Recharged and Rewired - a Column by Brittany Foster

“You just have to be patient.” I can’t begin to count how many times I’ve heard this throughout my years of managing chronic illness. Although I have 26 years of experience with doctor’s appointments, testing, surgeries, medications, and the ... Read more

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