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 European Commission (EC) is working on a proposal for an EU Disability Card, to make it easier for people with disabilities to access some services while travelling within the EU. There is currently no mutual recognition of disability status between the EU Member States. This can cause difficulties for persons with disabilities travelling in the EU.
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 »
This booklet was developed by the Pulmonary Hypertension Association UK (PHA UK) as a guide to treating and managing pulmonary hypertension using drug therapies. Sections include conventional or supportive therapies (including oxygen), and targeted therapies, including those taken orally, intravenously or via a nebuliser. This booklet is regularly reviewed to keep the information as up-to-date
he Pulmonary Hypertension Association (PHA UK) iTs inviting adults with pulmonary hypertension, living in the UK, to take part in a new survey to better understand life with pulmonary hypertension. The deadline for submissions is now up (January 31, 2023) but we look forward to the hearing about the findings once the study is over.
The authors of this study on patient-reported outcome measures (PROMs), published in CHEST in November 2022, conducted a review of the published literature and clinical trials in pulmonary hypertension to identify and evaluate PROMs that assess pulmonary hypertension-specific health related quality of life (HRQoL) for use in clinical studies. The PROMs analysed were the Cambridge
Summary This article for the European Heart Journal Supplements has been written by two pulmonary arterial hypertension patients who describe the patient experience and explore the ways in which patients are increasingly being given a voice in developing approaches to treatment. As patients with pulmonary arterial hypertension are living longer, it is important that they
Abstract Improved care in pulmonary arterial hypertension has led to increased longevity for patients, with a paralleled evolution in the nature of their needs. There is more focus on the impact of the disease on their day-to-day activities and quality of life, and a holistic approach is coming to the front of pulmonary arterial hypertension
I’m B J-N , 42 years old living with my significant other. We don’t have any children. In my childhood and youth I was always very sporty and active. I’m into athletics, children’s gymnastics and finally even competitive gymnastics. I started horseback riding when I was 13. But even then I was always more susceptible
My life with pulmonary arterial hypertension and rheumatism, a patient story 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
Three patient representatives (Ralf Schmiedel, Pisana Ferrari, Hans-Dieter Kulla) contributed to the study and article. The first two are patients having undergone lung transplant, Mr Kulla is the President of ph e.v., German PH association. The other authors are Karen M. Olsson, Tanja Meltendorf, Manuel J Richter, Jan Fuge, Jan Christopher Kamp, Da-Hee Park, Henning
This booklet developed by by AIPI, Italian pulmonary hypertension association, contains pratical advice and tips for day-to-day life with pulmonary arterial hypertension. It stresses the importance of being organised and reserving one’s energies on what really matters. The condition has an impact on many aspects of life and relationships, so it is important to involve
A patient and carer survey was conducted in the USA with the aim of determining if participation in a pulmonary hypertension support group has a significant effect on quality of life (QOL) in a population of patients with pulmonary hypertension and their caregivers using the emPHasis-10 questionnaire. 165 subjects were enrolled in the study; 122
A large-scale international survey carried out in 2011 investigated four key areas affected by pulmonary arterial hypertension: physical and practical, emotional, social, and information needs and provided new insights into patients’ and carers’ experiences of living with the disease. Citation “Understanding the impact of pulmonary arterial hypertension on patients’ and carers’ lives”, Loïc Guillevin, Iain
