The Alliance for Pulmonary Hypertension has released its first ten “PEP Talks” – part of the peer-to-peer patient educational video series launched in May. The name is a fun play on our “Patients Empowering Patients” program, and these short videos share practical insights from the people who really get it – fellow patients and caregivers. […]
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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
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
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
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
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,
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
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”
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
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
PHA Canada has conducted four webinars so far this year. Watch these and past webinar recordings at this link on the PHA Canada website.
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
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.
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.
In this video, Chermaine Kwant, a registered dietician who has her own experience of living with pulmonary hypertension and lung transplant, explains how “one-pan meals” could be the key to making nutritious food without feeling drained. Watch the video at this link Iti s possible to activate subtitles in many different languages Disclaimer While every
Jen Cueva is both a pulmonary hypertension patient and a nurse by training, which gives her unique insights into the condition and on how it affects day to day life. Writing for the latest edition of Pulmonary Hypertension News, she explains how living in the present moment has done wonders for her well-being. Instead of
Nonprofit Team PHenomenal Hope launched its new educational website “Learn Live Breathe PH” on Rare Disease Day, February 28, 2023. Written by experts in the field the platform was created to help pulmonary hypertension patients navigate the complexities of living with this chronic illness and feel empowered by relevant, scientific information. The website provides guidance
The aim of the SPHERe study is to test the clinical and cost-effectiveness of a supervised exercise rehabilitation intervention with psychosocial support compared to best practice usual care for people with pulmonary hypertension in the community/outpatient setting. The SPHERe study is the first multi-centre clinical randomised controlled trial (RCT) to assess the clinical and cost
