Announcing five new “PEP Talks, part of our ongoing “Patient Empowering Patients” educational video series, September 28, 2026

We are thrilled to release five brand-new “Patients Empowering Patients” talks — five women, three countries (Italy, Turkey, the US), and five very different stories, all united by the same resilience and positive outlook that defines this community. From Aygün Mengelli Tomur’s lung transplant journey “From Waiting to Breathing: A New Beginning,” to Deger Kesimogluğlu’s […]

Announcing five new “PEP Talks, part of our ongoing “Patient Empowering Patients” educational video series, September 28, 2026 Read Post »

How tech improvements can benefit the chronic illness community, a testimony from Anna Jeter for Pulmonary Hypertension News, March 17, 2025

Anna Jeter, author of a recent article for Pulmonary Hypertension News, underwent a heart and lung transplant in 2018, and has since embraced smartwatch technology, and discovered valuable health management applications: Her smartwatch and phone helps track: Additional technology benefits include: Anna says she is thankful to live in a time of technological advancement that

How tech improvements can benefit the chronic illness community, a testimony from Anna Jeter for Pulmonary Hypertension News, March 17, 2025 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 »

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 »

Vacation tips for patients from Jolande de Jonge, pulmonary hypertension nurse consultant at Erasmus MC, Netherlands

Vacation is important, even if you have pulmonary hypertension. “Everyone needs a break now and then,” says Jolande de Jonge, pulmonary hypertension nurse consultant at Erasmus MC. In the latest edition of “Papillon,” the magazine of PHA Netherlands, she provides some tips for patients on vacation and says, “If there is anything we can support,

Vacation tips for patients from Jolande de Jonge, pulmonary hypertension nurse consultant at Erasmus MC, Netherlands Read Post »

The Dutch Pulmonary Hypertension Association expands its website to include a very comprehensive range of new resources

The Stichting Pulmonale Hypertensie / PH Association the Netherlands has expanded their website considerably with articles about different aspects of living with pulmonary hypertension: 🔹 Intimacy and sexuality🔹 Studying with PH🔹 PH and work🔹 Financial issues🔹 Nutrition🔹 Travel and holidays🔹 Children and PH🔹 Exercise and sports🔹 Government support at home🔹 Benefits for disable people NB!

The Dutch Pulmonary Hypertension Association expands its website to include a very comprehensive range of new resources Read Post »

A guide to intimacy for pulmonary hypertension patients published the US Pulmonary Hypertension Association, PHA

This guide has been created for adult members of the pulmonary hypertension community interested in or engaged in physically intimate and/or sexual activity. The guide addresses, inter alia, some common “myths” about sex in pulmonary hypertension, eg. that if you are a patient you are not sexual or desirable, that there are more important things

A guide to intimacy for pulmonary hypertension patients published the US Pulmonary Hypertension Association, PHA Read Post »

Colleen Brunetti’s book “Defining the new normal: A guide to becoming more than your diagnosis”, now available on Kindle for free!

Colleen Brunetti started her career as a teacher, but after her pulmonary hypertension diagnosis was forced to leave this field. She began a journey to re-invent herself implementing a holistic lifestyle and went on to become a certified health coach. In her book “Defining the new normal: A guide to becoming more than your diagnosis”

Colleen Brunetti’s book “Defining the new normal: A guide to becoming more than your diagnosis”, now available on Kindle for free! Read Post »

New webinar series on pulmonary hypertension in French by Belgian associations VZW and HTAP Belgique in collaboration with renowned expert Prof. Jean-Luc Vachéry

Important news for French-speaking pulmonary hypertension patients in Belgium and, indeed, in the rest of the world! PH Belgium – Pulmonale Hypertensie vzw, in collaboration with HTAP Belgique and Prof. Dr. Jean-Luc Vachiery is organising a series of webinars in French addressing a wide range of topics related to pulmonary hypertension including R&D, multidisciplinary care, the role of nurses in the coordination

New webinar series on pulmonary hypertension in French by Belgian associations VZW and HTAP Belgique in collaboration with renowned expert Prof. Jean-Luc Vachéry Read Post »

All the presentations from the Pulmonary Hypertension Association UK’s gathering are online. Topics include nutrition, physical activity and exercise, treatments and tests, echocardiograms and implantable devices, December 26, 2023

The Pulmonary Hypertension Association UK held its first ever ‘Together’ event in October 2023 in partnership with the Sheffield Pulmonary Vascular Disease Unit. Expert talks covered topics including treatments, research, nutrition, and physical activity, with a focus on empowering patients and their loved ones through developing knowledge and understanding. Here are the links to the

All the presentations from the Pulmonary Hypertension Association UK’s gathering are online. Topics include nutrition, physical activity and exercise, treatments and tests, echocardiograms and implantable devices, December 26, 2023 Read Post »

Interesting articles of “Advances in PH”, including on mental health, the role of caregivers and the use of wearables in pulmonary hypertension, August 21, 2023

Advances in Pulmonary Hypertension is the USA Pulmonary Hypertension Association‘s quarterly medical journal, directed by an editorial board of renowned experts with the oversight of PHA’s Scientific Leadership Council. The latest edition, Vol.22, N°2, 2023, features many interesting articles. Topics covered include: Full text of this edition of Advances in Pulmonary Hypertension is available at this link

Interesting articles of “Advances in PH”, including on mental health, the role of caregivers and the use of wearables in pulmonary hypertension, August 21, 2023 Read Post »

Traveling with pulmonary hypertension: useful advice from the Pulmonary Hypertension Association (PHA)

Don’t let a diagnosis of pulmonary hypertension make you think that your travel days are over! Traveling is still possible with some additional planning. Check out the PHA’s dedicated website section to gain insights on what factors to consider during your travels. The Pulmonary Hypertension Association page includes advice on different forms of travel: Learn

Traveling with pulmonary hypertension: useful advice from the Pulmonary Hypertension Association (PHA) Read Post »

The summer is here, at least in some parts of the globe! Here are some tips for patients on how to cope with high temperatures and exposure to sun

HTaPFrance HTaPFrance has just issued its indications on how to cope with warm weather when you have pulmonary hypertension. It recommends great caution as heat and sun can be dangerous. Read more on the HTaPFrance website at this link PHA The PHA offers supplementary recommendations for effectively managing pulmonary hypertension medication in warm weather conditions.

The summer is here, at least in some parts of the globe! Here are some tips for patients on how to cope with high temperatures and exposure to sun Read Post »

Traveling with pulmonary hypertension: a comprehensive guide developed by the US Pulmonary Hypertension Association, the PHA

Planning a trip can be an exciting experience, but for patients dealing with pulmonary hypertension additional considerations and precautions are necessary. The PHA website offers a dedicated web page specifically designed to provide valuable advice for patients who wish to travel. On this dedicated web page, patients can find a wealth of helpful information, tips,

Traveling with pulmonary hypertension: a comprehensive guide developed by the US Pulmonary Hypertension Association, the PHA Read Post »

French patient shares helpful tips on how to “wear” a pump for IV infusion in a way that is discreet and how to talk about it to one’s colleagues, a video shared by HTaPFrance, the French Pulmonary Hypertension Association

Coline, a 34-year-old French pulmonary arterial hypertension patient living in Paris, diagnosed seven years ago, shares her tips on how to “style” a pump for intravenous infusion and on how to talk about it to one’s colleagues. The video is available at this link on the YouTube channel of HTaPFrance.

French patient shares helpful tips on how to “wear” a pump for IV infusion in a way that is discreet and how to talk about it to one’s colleagues, a video shared by HTaPFrance, the French Pulmonary Hypertension Association Read Post »

Final call for the UK Pulmonary Hypertension Association (PHA UK), survey to understand more about nutrition and pulmonary hypertension

PHA UK’s is the first survey ever conducted about pulmonary hypertension and nutrition in the UK. As part of PHA UK’s work to help people enjoy a better quality of life with pulmonary hypertension, they would like to explore more about the role of nutrition and the difference it can make in this disease area.

Final call for the UK Pulmonary Hypertension Association (PHA UK), survey to understand more about nutrition and pulmonary hypertension Read Post »

The recording of the recent informative webinar on pulmonary hypertension and nutrition, organized by the ANHP (Asociación Nacional de Hipertensión Pulmonar), is now accessible

On 13 April 2023 the Asociación Nacional de Hipertensión Pulmonar, Spanish pulmonary hypertesion association, hosted a webinar titled “Pulmonary hypertension and nutrition: can diet help in the treatment of PH?”, featuring as speaker Ms Marina Sisso, a dietician and clinical nutritionist at the Hospital Clínic de Barcelona, specialised in the area of Pulmonology and Cardiology.

The recording of the recent informative webinar on pulmonary hypertension and nutrition, organized by the ANHP (Asociación Nacional de Hipertensión Pulmonar), is now accessible Read Post »

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