How to explain the complexities of pulmonary hypertension to others, Jolie Lizana, Pulmonary Hypertension News, January 30, 2026

A powerful piece by patient advocate Jolie Lizana recently published on Pulmonary Hypertension News tackles a crucial but often overlooked challenge: how to explain pulmonary hypertension to others when it’s such a complex, invisible disease. Writing from her own 12-year journey living with pulmonary hypertension and heart failure, Lizana realized that even within the pulmonary […]

How to explain the complexities of pulmonary hypertension to others, Jolie Lizana, Pulmonary Hypertension News, January 30, 2026 Read Post »

The pulmonary arterial hypertension (PAH) patient perspective, International Journal of Cardiology Congenital Heart Disease, September 2025 edition

This article titled “The pulmonary arterial hypertension patient perspective”, explores the experiences of patients living with pulmonary arterial hypertension associated with Congenital Heart Disease (PAH-CHD). Thanks to medical advances, many individuals with congenital heart disease are now living longer, but face numerous challenges including physical limitations, mental health issues, relationship strains, financial burdens, and family

The pulmonary arterial hypertension (PAH) patient perspective, International Journal of Cardiology Congenital Heart Disease, September 2025 edition Read Post »

“Beyond Survival: 11 Years, 2 Lung Transplants, and the Quiet Miracle of Breathing”, Alena Adarbehova

Alena’s journey transcends ordinary resilience. After battling pulmonary hypertension for a decade, surviving two double lung transplants, and undergoing over 200 photopheresis sessions, she now embraces life with just 34% lung function—yet lives it fully. Her story bridges cultures, identities, and the profound gift of donated organs. As she marks 11 years since her first

“Beyond Survival: 11 Years, 2 Lung Transplants, and the Quiet Miracle of Breathing”, Alena Adarbehova Read Post »

Latest edition of “Pathlight”, the US Pulmonary Hypertension Association’s quarterly magazine, now out!

The latest issue of the quarterly Pathlight magazine of the US Pulmonary Hypertension Association, the PHA, celebrates pulmonary hypertension heroes. As National Volunteer Month approaches, the association acknowledges the people who make this organization a success. This issue also includes articles about imaging innovations, managing medication side effects and swimming with subcutaneous therapy.  To receive

Latest edition of “Pathlight”, the US Pulmonary Hypertension Association’s quarterly magazine, now out! Read Post »

Living with Pulmonary Arterial Hypertension: Early Diagnosis, Patient Advocacy, and the Role of Technology, Maleen Fischer, Cambridge Network News, electronRx blog

Maleen Fischer, whose “blue lips” in infancy were dismissed by doctors for nearly four years before receiving a diagnosis of pulmonary arterial hypertension at age four. In a recent article for Cambridge Network News and in a blog for electronRx she shares how despite years on continuous IV medication and isolation during childhood and adolescence,

Living with Pulmonary Arterial Hypertension: Early Diagnosis, Patient Advocacy, and the Role of Technology, Maleen Fischer, Cambridge Network News, electronRx blog Read Post »

My journey with pulmonary hypertension: From diagnosis to thriving, Hall Skaara, International Journal of Cardiology Congenital Heart Disease, March 2025

Hall Skaara is a pulmonary arterial hypertension patient. His article about life as a patient has been published in the International Journal of Cardiology: Congenital Heart Disease. Hall was diagnosed with idiopathic pulmonary hypertension after cardiac issues and two ablations, but has transformed his diagnosis into an opportunity to help others. Despite physical limitations, he

My journey with pulmonary hypertension: From diagnosis to thriving, Hall Skaara, International Journal of Cardiology Congenital Heart Disease, March 2025 Read Post »

The European Pulmonary Hypertension Association, PHA Europe, launches new 2025 awareness campaign, titled “Without you there would be no Us”

The new campaign by PHA Europe “Without You There Would Be No Us” celebrates 25 years of progress in pulmonary hypertension care by honouring the contributions of health care providers, medical teams, researchers, associations, individuals, pharmaceutical companies. Through inspiring stories and gratitude, it aims to raise awareness, strengthen sponsor relationship, attract new partnerships, and highlight

The European Pulmonary Hypertension Association, PHA Europe, launches new 2025 awareness campaign, titled “Without you there would be no Us” Read Post »

How to deal with setbacks when managing pulmonary arterial hypertension, Pulmonary Hypertension News, January 29, 2025

This article by Jen Cueva, a pulmonary hypertension patient, reflects on the challenges of managing setbacks, particularly for those with pulmonary arterial hypertension and other chronic conditions, emphasizing that setbacks are not failures but may represent opportunities to adjust and persevere. It highlights the importance of self-compassion, rest, and leaning on support systems to navigate

How to deal with setbacks when managing pulmonary arterial hypertension, Pulmonary Hypertension News, January 29, 2025 Read Post »

Living with pulmonary arterial hypertension: a patient’s perspective: Natalia Maeva, Breathe, January 21, 2025

Natalia Maeva, a patient diagnosed with pulmonary arterial hypertension in 2009, shares a deeply personal account of living with the condition, focusing particularly on the harrowing experience of dyspnoea crises for Breathe. Natalia says that these crises, characterized by a visceral feeling of suffocation, fundamentally transformed her life, forcing her to recalculate every action and

Living with pulmonary arterial hypertension: a patient’s perspective: Natalia Maeva, Breathe, January 21, 2025 Read Post »

The phaware global association celebrates 500 podcasts and being voted #1 of the “10 Best Pulmonary Hypertension Podcasts You Must Follow in 2025”

Looking back on the year 2024, PHAWARE’s founder Steve Van Wormer reflects on an extraordinary year of milestones that exemplify the association’s dedication to raising awareness and fostering innovation for the pulmonary hypertension community. Among the notable achievements: the successful launch of a groundbreaking new app, the remarkable milestone of 500 episodes of the inspiring

The phaware global association celebrates 500 podcasts and being voted #1 of the “10 Best Pulmonary Hypertension Podcasts You Must Follow in 2025” Read Post »

“Make-A-Wish” grants a young Dutch woman waiting for a lung transplant a dream day with her family

Lot is a vibrant young woman with an incredibly positive outlook on life, despite the fact that her daily routine is heavily influenced by her health. Born with a congenital heart defect, Lot was diagnosed with pulmonary arterial hypertension (PAH) at just six years old. Reflecting on her wait for donor lungs, Lot shares: “About

“Make-A-Wish” grants a young Dutch woman waiting for a lung transplant a dream day with her family Read Post »

Natalia Maeva’s inspirational path from pulmonary arterial hypertension and double lung transplant to European Championship

Natalia Maeva, a dedicated pulmonary hypertension advocate and double lung transplant recipient, has accomplished an incredible milestone as part of the Bulgarian transplant team. Eight years after her life-saving operation, she won a gold medal in badminton at the European Transplant Sports Championship in Lisbon, Portugal, becoming the European champion in the 50-59 age category.

Natalia Maeva’s inspirational path from pulmonary arterial hypertension and double lung transplant to European Championship Read Post »

Newsletters involve a lot of effort – why limit all that work to our own local communities? Break down those borders and share the knowledge!

As dedicated volunteers for pulmonary hypertension associations, we know just how much work there is in putting together our newsletters. Beyond content creation, it involves research, writing, photo selection, layout design, printing, and distribution. Newsletters connect communities, providing updates on crucial developments. Our mission at PH-KSP is to break barriers, fostering the exchange of knowledge

Newsletters involve a lot of effort – why limit all that work to our own local communities? Break down those borders and share the knowledge! Read Post »

“Live PHearlessly”, a campaign conducted by the Pulmonary Hypertension Association (PHA) USA for Pulmonary Hypertension Awareness Month, November 2023

Throughout the month of November 2023, the Pulmonary Hypertension Association (PHA) USA shared the stories of people who “Live PHearlessly” to raise awareness of pulmonary hypertension. More than 30 people with the condition participated. See their stories at this link on the Pulmonary Hypertension Association website. Coupled with those stories, the Pulmonary Hypertension Association also

“Live PHearlessly”, a campaign conducted by the Pulmonary Hypertension Association (PHA) USA for Pulmonary Hypertension Awareness Month, November 2023 Read Post »

French pulmonary arterial hypertension patient Anne-Narie Amilhat celebrates 35 years from her heart/lung transplant!

Anne-Marie Amilhat, a 73-year-old woman from France, received a diagnosis of pulmonary arterial hypertension in 1980 and underwent heart/lung transplant surgery in 1988. Recently, she joyously marked her 35th transplant anniversary surrounded by family and friends. The celebration was graced by the presence of Prof. Philippe Dartevelle, a thoracic surgeon at Marie Lannelongue Hospital, France,

French pulmonary arterial hypertension patient Anne-Narie Amilhat celebrates 35 years from her heart/lung transplant! Read Post »

Unyielding Spirit: Rob van der Aa’s inspiring journey with hereditary pulmonary arterial hypertension

We would like to thank our friends and colleagues at the Dutch Pulmonary Hypertension Association for having shared with us the very touching story of Rob van der Aa. Rob is a remarkable individual who, regardless of the physical toll of pulmonary arterial hypertension, strives to contribute meaningfully to society, dedicating himself to both academic

Unyielding Spirit: Rob van der Aa’s inspiring journey with hereditary pulmonary arterial hypertension Read Post »

Embracing Life: Rob’s Journey with familial pulmonary arterial hypertension

This article was originally published in “Papillon”, the magazine of the Dutch Pulmonary Hypertension Association’s, in the first edition of 2023, at pages 8-9. The author is Anita Harte. We extend our heartfelt thanks to Rob for having shared his journey with us. Rob (39) has familial pulmonary arterial hypertension. He is a member of

Embracing Life: Rob’s Journey with familial pulmonary arterial hypertension Read Post »

Sunday “mixing parties”: a husband’s creative way to prepare his wife’s pulmonary hypertension medications to the beat of their favorite tunes!

Micheal Garrett is a pulmonary hypertension caregiver from Humble in Texas, USA. He is a caregiver for his wife, who is 42, and was diagnosed in December 2017 with pulmonary arterial hypertension. Along with her pulmonary arterial hypertension diagnosis, she was also diagnosed with Lupus. She is on intravenous therapy with Veletri (epoprostenol). Michael started

Sunday “mixing parties”: a husband’s creative way to prepare his wife’s pulmonary hypertension medications to the beat of their favorite tunes! Read Post »

In a TEDx talk Migdalia Denis, Leader of the Pulmonary Hypertension Latin Society, explores the transformative power of adversity and how it can lead us to discover our true purpose

Migdalia Denis, leader of the Latin America Pulmonary Hypertension Association (Sociedad Latina de Hipertensión Pulmonar), was invited on May 18, 2018, to deliver a TEDx talk. Migdalia has recently sent us the link to her talk and asked us to share it on the PH-KSP, in the hope that her message may inspire others to

In a TEDx talk Migdalia Denis, Leader of the Pulmonary Hypertension Latin Society, explores the transformative power of adversity and how it can lead us to discover our true purpose Read Post »

“From Diagnosis of CTEPH to Triumph: Rishabh’s Journey of Resilience and Restoration”, May 31, 2023

Author: Pisana Ferrari, May 25, 2023, based on interview Introduction In the past few decades, significant strides have been made in the field of chronic thromboembolic pulmonary hypertension (CTEPH), encompassing enhanced disease comprehension, innovative therapies and surgical advancements. However, living with CTEPH continues to pose physical, practical, emotional, and social challenges for patients, families, and

“From Diagnosis of CTEPH to Triumph: Rishabh’s Journey of Resilience and Restoration”, May 31, 2023 Read Post »

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