Updates

December 4, 2019December 4, 2019
PH Is Possible Complication of Bone Marrow Transplants in Children, Study Shows

Children who undergo bone marrow transplants could develop pulmonary hypertension (PH), which could lead to severe complications if not diagnosed and treated promptly, a ... Read more
December 2, 2019November 26, 2019
The Healing Power of Laughter

It is said that laughter is the best medicine. My son’s battle with pulmonary hypertension (PH) and post-transplant struggles made me a believer. ... Read more
December 2, 2019December 2, 2019
Study Suggests CPET as Way to Identify PAH in Systemic Sclerosis Patients

Cardiopulmonary exercise testing can improve the ability of an algorithm to identify systemic sclerosis patients who have pulmonary arterial hypertension ... Read more
November 30, 2019November 30, 2019
30 Days of PH: Husband and Humor

View this post on Instagram Day 30 of 30 Days of PH⁣ Topic: Husband and humor ⁣ ⁣ This is Jeff’s story.⁣ ⁣ It ... Read more
November 29, 2019November 30, 2019
30 Days of PH: Research and Advancements

View this post on Instagram Day 29 of 30 Days of PH⁣ Topic: Research and Advancements⁣ This is Donna’s story @donnahead1961⁣ ⁣ Severe SOB ... Read more

30 Days of PH

30 Days of PH: California Wildfires
November 28, 2019November 30, 2019
View this post on Instagram Day 28 of 30 Days of PH⁣⁣ Topic: California ...
30 Days of PH

30 Days of PH: Farm Life
November 27, 2019
View this post on Instagram Day 27 of 30 Days of PH⁣ Topic: Farm ...
News, PH News

Liminal Biosciences’s PBI-4050 Reduces Pulmonary Hypertension, Preclinical Data Show
November 27, 2019November 27, 2019
New preclinical data supports the positive effects of Liminal Biosciences’s lead candidate, PBI-4050, in reducing pulmonary ...
30 Days of PH

30 Days Of PH: SubQ Life
November 26, 2019
View this post on Instagram Day 26 of 30 Days of PH⁣⁣ Topic: SubQ ...
30 Days of PH

30 Days of PH: Challenges in Mexico
November 25, 2019
View this post on Instagram Day 25 of 30 Days of PH⁣ Topic: Challenges ...
Columns, Life As A Caregiver - a Column By Colleen Steele

Sharing Hope and Expressing Gratitude for Our PHamily
November 25, 2019November 21, 2019
As Pulmonary Hypertension Awareness Month draws to a close, the complexities of this disease ...

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Actelion Pulls Requests for Opsumit to Treat Inoperable CTEPH to Gather More Data
November 25, 2019November 25, 2019
Actelion Pharmaceuticals has withdrawn all ongoing worldwide requests for expanded approval of Opsumit (macitentan), ...
30 Days of PH: College Life
November 24, 2019
View this post on Instagram Day 24 of 30 Days of PH⁣ Topic: College ...
30 Days of PH : Men Get PH, Too
November 23, 2019
30 Days of PH: Staying Active
November 22, 2019
I’m Thanking My Body This Thanksgiving
November 22, 2019November 19, 2019
Giving Thanks Despite a Curveball
November 22, 2019November 20, 2019

Access to Costly Therapies Top Concern of PH Patients in US, PHA’s Brad Wong Says
November 22, 2019November 22, 2019
Like many rare disease charities, the Pulmonary Hypertension Association (PHA) was formed in 1991 by ...
30 Days of PH: Living Independently
November 21, 2019November 22, 2019
30 Days of PH: Potts Shunt
November 20, 2019
Antibody Able to Block Protein That Promotes PAH and May Bolster Existing Therapies, Study Finds
November 20, 2019November 20, 2019

30 Days of PH: Familial PH
November 19, 2019
View this post on Instagram Day 19 of 30 Days of PH⁣ ⁣Topic: Familial ...
30 Days of PH: Retirement
November 18, 2019
Living Life Focused on Quality, Not Quantity
November 18, 2019November 14, 2019

News, PH News

Bellerophon’s INOPulse Device Leads to Clinically Meaningful Improvements in PH-ILD, Early Data Shows
November 18, 2019November 18, 2019
Use of Bellerophon Therapeutics’s INOpulse device led to clinically meaningful improvements in people with ...
30 Days of PH

30 Days of PH: Implantable Pump
November 17, 2019November 18, 2019
View this post on Instagram Day 17 of 30 Days of Ph ⁣ Topic: ...
30 Days of PH

30 Days Of PH: PTE Surgery
November 16, 2019November 18, 2019
View this post on Instagram Day 16 of 30 Days of PH⠀ Topic: PTE ...
30 Days of PH

30 Days of PH: Beating PH And Cancer
November 15, 2019
View this post on Instagram Day 15 of 30 Days of PH⁣⠀ ⁣Topic: Beating ...
News

Rare Disease Film Festival Highlights Patient and Researcher Unity
November 15, 2019November 16, 2019
Rare disease-themed videos glowed on a large screen before an audience of people in ...
Columns, Worth the PHight - a Column by Jen Cueva

While Difficult to Share, Here Is My PH Story
November 15, 2019November 13, 2019
November is Pulmonary Hypertension Awareness Month, a good time to share a little more ...
Columns, Recharged and Rewired - a Column by Brittany Foster

My Recent Surgery Triggered My PTSD
November 15, 2019November 13, 2019
Last week, I scrolled through Pinterest on my phone as I was wheeled into the endoscopy ...
30 Days of PH

30 Days of PH : Military Wife And Mom
November 14, 2019
View this post on Instagram Day 14 of 30 Days of PH ⠀ Topic: ...
30 Days of PH

30 Days of PH: Grief
November 13, 2019
View this post on Instagram Day 13 of 30 Days of PH⁣⠀ Topic: Grief⁣⠀ ...
News, PH News

INOpulse Improves Physical Activity in PH-PF Patients, Early Trial Results Show
November 13, 2019November 13, 2019
The vasodilator INOpulse increased physical activity and helped maintain higher levels of exercise in ...
30 Days of PH

30 Days of PH: Alternative Therapies
November 12, 2019
View this post on Instagram Day 12 of 30 Days of PH⁣⁣⠀⁣⁣ Topic: Alternative ...
Chronically Uncool – a Column by Ellie Bird, Columns

Opening Up About My Diagnosis
November 11, 2019November 13, 2019
One of the hardest parts for me about having a serious chronic illness is ...
30 Days of PH

30 Days of PH: Growing Up With A Mom With PH
November 11, 2019
View this post on Instagram Day 11 of 30 Days of PH⁣⠀ ⁣Topic: Growing ...
News, PH News

Infants with PPHN More Likely to be Readmitted to Hospital Within First Year, Study Reports
November 11, 2019November 13, 2019
Infants with mild or severe forms of persistent pulmonary hypertension of the newborn, who ...
Columns, Life As A Caregiver - a Column By Colleen Steele

Responding to Questions About Transplant as a ‘Cure’ for PH
November 11, 2019November 13, 2019
No cure exists for pulmonary hypertension (PH). People often ask, “But isn’t transplant a ...

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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