The aim of this publication is to guide patients through the process of notifying the Driver and Vehicle Licensing Agency of your pulmonary hypertension, answer some of the common questions we hear, and help you understand what to expect along the way. Read more at this link on the PHA UK website
Developed by psychologists, and supported by the UK’s pulmonary hyeprtension association, PHA UK, this four-week programme consists of a series of workbooks based on Cognitive Behavioural Therapy (CBT), to help patients change their thinking habits and behaviours. Find our more at this link on the PHA UK website
“Ask a PH Doc” is a new program designed by the Canadian pulmonary hypertension association PHA Canada to connect the pulmonary hypertension community with Canadian specialists. One can submit general questions about diagnosis, medications, lifestyle, mental health, caregiving, and navigating the healthcare system in Canada. Every question receives a response, either directly by email, or
Lisa Harder is PHA Canada’s newest Knowledge Philanthropist. These are specialized volunteers help the organization fulfill its mission. Each Knowledge Philanthropist serves the pulmonary hypertension community in their own way. Depending on their professional background, they develop resources, content from current research projects, help raise awareness, and more! Lisa brings a unique perspective as both
The UK Pulmonary Hypertension Association’s free form has been designed to help patients prepare for remote medical appointments. Completing it it beforehand can help make the most of the visits. Download the form at this link on the PHA UK website
The Pulmonary Hypertension Patient Engagement & Empowerment Series is a new evidence-based resource designed to help people living with pulmonary hypertension and their families and carers to be more informed, confident, and empowered. The series was developed by Pulmonary Vascular Research Institute IDDI Patient Engagement & Empowerment Workstream. The series explores 11 core themes, including:
“Heart Works” key features: Real-time health data tracking: including advanced quality-of-life surveys and 6-minute walk tests, allowing patients to closely monitor their progression. Access to Phaware resources: 500+ curated phaware® podcasts, webinars, and expert interviews on pulmonary hypertension. Access to international resources: Thanks to partnerships with leading organizations including Stanford Wall Center, University of Alberta,
The IDDI Patient Engagement and Empowerment Workstream of the Pulmonary Vascular Research Institute has created an 11-part series to support people living with pulmonary hypertension, and for their families and carers. The series is designed to help people living with pulmonary hypertension to feel more informed, confident and empowered. Empowerment means gaining the knowledge, skills,
Menopause affects many women in the pulmonary hypertension community. This new publication by the UK Pulmonary Hypertension Association, PHA UK, answers common questions, shares real experiences, and brings expert advice to help make things a little easier for patients. Order this free resource on the PHA UK website at this link
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 week (12th-18th May) is Mental Health Awareness Week in the UK. Over the years the UK pulmonary hypertension association, PHA UK, has built up a range of services and resources to help patients that are struggling with anxiety, depression, or general mental wellbeing, you can find all the details at here.
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
During a hospital stay described in her December 4, 2024 article for Pulmonary Hypertension News, Jen Cueva, a pulmonary hypertension patient, discovered potentially dangerous errors in her medication records. Her experience, detailed in “Organizing health information is crucial to rare disease management,” demonstrates why maintaining accurate, up-to-date medication lists is essential for patient safety, particularly
The patient booklet on lung transplant by AIPI, Italian Pulmonary Hypertension publication “Guida al Trapianto di polmoni” has been adapted and translated into English by Pisana Ferrari, President of AIPI. You can now translate the entire booklet directly from here using the orange button at the bottom of the page: 40 languages are currently available
The European Lung Foundation educational resources about remote care and the use of digital tools include text and videos covering: 🔹 Video calls for consultations🔹 Sharing photos or videos🔹 Virtual wards and home monitoring🔹 Online rehabilitation and activity sessions🔹 Online diaries, journals or questionnaires🔹 Online questionnaires🔹 Wearable devices🔹 Health apps🔹 Benefits of digital healthcare technologies
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”
In the past few months, the European Society for Organ Transplant (ESOT) channels have been running a campaign called “Take 2 – the new Me after a transplant”. The campaign seeks to empower patients by offering them valuable and reliable information and resources that can enhance their pre and post-transplant journey and raise public attention
The most familiar exercise capacity test in the field of pulmonary arterial hypertension is the 6-Minute Walk Test, where patients walk up and down a corridor for 6 minutes while their physiological parameters and distance walked are measured. This test is also used in other, different types of diseases, and Dr Joe Newman, a clinical
Are you currently grappling with pulmonary hypertension and finding that it’s impacting your emotional well-being, possibly leading to feelings of low mood or depression? The Pulmonary Hypertension Association UK has partnered with researchers at the University of Cardiff and Nottingham Trent University to conduct a study evaluating a new self-help programme for pulmonary hypertension patients who live
