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. […]
Looking for volunteers for our future “PEP Talks”! Read Post »
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,
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!
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
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
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.
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.
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
The patient booklet titled “An appetite for life”, developed by the Polish pulmonary hypertension association PHA Polska, contains valuable advice about nutrition for patients with pulmonary hypertension. It also provides tips on how patients can adapt their diet to their condition without sacrificing the pleasure of eating well, and features a number of recipes. It
Patient booklet on nutrition by the Polish pulmonary hypertension association PHA Polska Read Post »
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
