Updates

October 15, 2019
How Diet Can Help Support Patients with Pulmonary Hypertension: A Nutritionist’s View

The mechanics of pulmonary hypertension (PH) create a cascade of events that affect the cardiovascular system, kidneys, respiratory system, and digestive system. Though symptoms, ... Read more
October 14, 2019October 10, 2019
Crafting New Dreams for My Life

This is probably the hardest column I’ve written to date. It’s about how I deal with thinking about the future. I have been a ... Read more
October 14, 2019October 10, 2019
Make-A-Wish Foundation Provides Joy to Children, Families, and Volunteers

In last week’s column, I shared how the Make-A-Wish Foundation granted my son Cullen’s prodigious wish to meet President George W. Bush in 2008. To ... Read more
October 14, 2019October 14, 2019
Respira Reacquires Full Rights Over RT234 for As-Needed PAH Symptom Relief

Respira Therapeutics has regained full worldwide research, development, and licensing rights over its inhaled medicine-device combination product, called RT234, for the treatment of pulmonary ... Read more
October 11, 2019October 9, 2019
My Life Is About Waiting and Being Present in the Moment

Living in the moment feels like an impossible feat while managing a chronic illness. It is hard to keep my mind on the present ... Read more

Columns, Worth the PHight - a Column by Jen Cueva

My Free Advice to PH Newcomers
October 11, 2019October 9, 2019
Nowadays, we pay for just about anything imaginable. But today is your lucky day! ...
News

PH Doubles Risk of Death in People with Tricuspid Regurgitation, Study Reports
October 11, 2019October 11, 2019
Pulmonary hypertension contributes to markedly poorer outcomes and doubles a risk of death in ...
News

HMGB1 Protein May Be Biomarker of Persistent Pulmonary Hypertension of the Newborn, Study Reports
October 10, 2019October 10, 2019
Measuring the levels of an inflammatory protein known as HMGB1 may help diagnose persistent ...
News, PH News

Low Blood Levels of Secretin Hormone May Trigger PH, Mouse Study Suggests
October 9, 2019October 9, 2019
Loss of a hormone called secretin (SCT) induces hypertension, scarring, and structural alterations in ...
Chronically Uncool – a Column by Ellie Bird, Columns

Adjusting My Diet for Health Benefits While Avoiding a Guilty Mindset
October 7, 2019October 7, 2019
In last week’s column, I wrote about the challenges of making time for rest. ...
Columns, Life As A Caregiver - a Column By Colleen Steele

My Son Dreamed Big, and Make-A-Wish Made it Happen
October 7, 2019October 4, 2019
In 2008, my 8-year-old son was diagnosed with pulmonary hypertension (PH). Being told that ...

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Positive Data Supports Advancing Rodatristat Ethyl to Phase 2 Trials in PAH Patients, Altavant Says
October 7, 2019October 7, 2019
Oral treatment with rodatristat ethyl is safe and well-tolerated, according to results from two ...
Finding Joy in a Walk to the Ocean While Visiting My Favorite City
October 4, 2019October 2, 2019
A few weeks ago, I wrote about planning happy moments amid the storms. I ...
The Girl with the Turtle Tattoo
October 4, 2019October 2, 2019
Halting Slug Protein May Lessen Risk of PH in Fibrotic Lungs, Study Suggests
October 4, 2019October 4, 2019
Blocking EYA3 Enzyme May Prevent Vascular Remodeling Seen in PAH, Study Suggests
October 3, 2019October 3, 2019
PHA Recognizes Loma Linda University Health as Accredited PH Center, 1st in California
October 2, 2019October 2, 2019

FAQs About Pulmonary Hypertension
October 2, 2019October 2, 2019
Pulmonary hypertension (PH) is a rare, life-threatening disease that occurs because of high blood ...
Rest and PH: When My Body Talks, I Listen
September 30, 2019October 2, 2019
How to Keep PH From Ruining Halloween Fun
September 30, 2019September 26, 2019
RNF213 Gene Variant a Risk Factor for Poor Outcomes, Treatment Resistance in PAH, Study Reports
September 30, 2019September 30, 2019

Educating TSA Agents About PH and Disability Issues
September 27, 2019September 26, 2019
Traveling by plane can be stressful for anyone. Flying with pulmonary hypertension (PH) and ...
Physical Exhaustion Leaves Me with Unspoken Fears
September 27, 2019September 25, 2019
PAH Incidence Rare in France But Carries High Economic Burden, Study Shows
September 27, 2019September 27, 2019

News

NORD 2019 Rare Disease Summit Set for Oct. 21-22 in Washington, DC
September 27, 2019September 27, 2019
Next month’s annual conference of the National Organization for Rare Disorders (NORD) in Washington, ...
News

Significant Racial Variability Exists Among Subtypes and Survival in Children with PH, Study Says
September 26, 2019September 26, 2019
Analysis of a North American pediatric registry revealed significant variability of pulmonary hypertension (PH) ...
News

Arterial Shunt for PAH Receives FDA’s Breakthrough Device Designation
September 26, 2019September 26, 2019
V-Wave’s new interatrial shunt — a medical device designed to reduce arterial heart pressure ...
News, PAH News

Translate Bio Focused on Developing New Candidates to Treat PAH, Other Pulmonary Diseases
September 25, 2019September 25, 2019
Translate Bio is focusing its efforts on the development of new therapies targeting pulmonary ...
Chronically Uncool – a Column by Ellie Bird, Columns

Going After Your Dream Job When You Have a Chronic Illness
September 23, 2019September 25, 2019
Holding down a job when you have a chronic illness can be really tricky. ...
Columns, Life As A Caregiver - a Column By Colleen Steele

Tips on Organizing PH Supplies at Home
September 23, 2019September 25, 2019
Change is inevitable when you or a loved one is diagnosed with pulmonary hypertension ...
News, PAH News

Altavant Sciences Details Its ‘Patient-centric’ Approach to PAH Clinical Trials
September 23, 2019September 25, 2019
Altavant Sciences presented its patient-centered approach to drug development, which informed the design of ...
News

Owlstone Launches New Generation of Tools to Support ID of Disease Biomarkers on Person’s Breath
September 20, 2019September 20, 2019
Owlstone Medical announced that it has introduced a new ReCIVA Breath Sampler and CASPER Portable ...
Columns, Recharged and Rewired - a Column by Brittany Foster

When I Say I Can’t Get Pregnant, Hearing ‘You Never Know’ Hurts
September 20, 2019September 17, 2019
“Is there any chance you are pregnant?” Unfortunately, I have had to answer this ...
Columns, Worth the PHight - a Column by Jen Cueva

Coexisting Conditions Make Managing PH Even More Challenging
September 20, 2019September 18, 2019
Managing pulmonary hypertension (PH) can be exhausting. Adding coexisting conditions makes it even more ...
News

FDA Grants ‘Humanitarian Use Device’ Status to Tool for PAH Biopsies, Supporting Possible Approval
September 18, 2019September 18, 2019
The Endoarterial Biopsy Catheter (EABC), a tool for performing biopsies on lung artery walls ...
Chronically Uncool – a Column by Ellie Bird, Columns

Exercise and PH: Becoming Active Again After Diagnosis
September 16, 2019September 18, 2019
After I was diagnosed with pulmonary hypertension (PH), I was so scared of doing ...
Columns, Life As A Caregiver - a Column By Colleen Steele

My Son’s Friendship Was Not Defined by PH
September 16, 2019September 18, 2019
My son Cullen was excited to tell me he’d made a friend on his ...
News

Acceleron’s Sotatercept Receives FDA’s Orphan Drug Status for PAH
September 16, 2019September 18, 2019
The U.S. Food and Drug Administration (FDA) has granted orphan drug status to sotatercept ...
Columns, Recharged and Rewired - a Column by Brittany Foster

Weight Management Is an Ongoing Challenge While Living with PH
September 13, 2019September 25, 2019
For the first 18 years of my life, I rarely thought about my weight. ...

March 2, 2018September 11, 2019

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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