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 »
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
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,
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”
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.
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,
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.
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.
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.
http://www.phocusonlifestyle.org is the “sister” website to that of the UK Pulmonary Hypertension, PHA UK. It is aimed at patients and peers supporting each other through stories. It also houses written resources covering a very wide range of issues related to living with pulmonary hypertension including:
The 4-part video series developed by the Pulmonary Hypertension Association of Canada, PHA Canada, covers the following topics: The video series can be viewed at this link on the PHA Canada website
Healthy lifestyle alongside medical treatment is very important in pulmonary hypertension. The aim of the new “Nutrition and PH” section on the PHA UK’s website is to help patients understand more about nutrition. It contains expert advice, videos, details of the PHA UK research in this area, and the page is open for patient questions.
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 »
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
Useful information about healthy lifestyle habits including nutrition, exercise and sleep in this article by health reporter for WebMedAmanda Gardner medically reviewed by Neha Pathak, MD The article can be viewed on the WebMD web page at this link
“Living Your Best With Pulmonary Hypertension”, WebMD Read Post »
The PAH Initiative was established by United Therapeutics with the aim of providing knowledge and inspiration based on science and research in pulmonary arterial hypertension today. Here you can find interesting information on pulmonary arterial hypertension, treatments and life style advice as well as patient testimonials. The “Learning Library” section of the PAH initiative contains useful
