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” […]
We are thrilled to share a remarkable project undertaken by the French Pulmonary Hypertension Association, HTaPFrance. In collaboration with the talented author, Thomas Penin, they have brought to life a poignant story through a graphic novel. The graphic novel revolves around a fictional woman patient grappling with pulmonary arterial hypertension. The protagonist embarks on a
Read the winter issue of “EmPHasis” at this link on the PHA UK website
The findings of the UK Pulmonary Hypertension Association’s major research into people’s lived experiences of pulmonary hypertension have now been published and you can find them here. The survey was completed 859 times, and the results will underpin the UK Pulmonary Hypertension Association’s charitable activity for the next five years. Disclaimer While every possible effort
This survey, the first of its kind, has been designed to help improve global understandings of how pulmonary hypertension affects the lives of patients and in what ways pulmonary hypertension care needs to be improved. The survey has been written by a multidisciplinary panel of pulmonary hypertension specialists and patient group advocates from the pulmonary
PHA Canada has conducted four webinars so far this year. Watch these and past webinar recordings at this link on the PHA Canada website.
IFinding a way for pulmonary hypertension to carry their pump for IV medication in a way that works for them is important. The PHA UK invites patients who have found the “perfect bag”, or maybe even a home made one, to send a photo so they can share it to inspire others. Reply to media@phauk.org
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 PHA page includes advice on different forms of travel: Learn more at
A recent study published in Pulmonary Circulation demonstrated the effectiveness of a newly developed video e-learning tool in improving nutrition and quality of life for pulmonary arterial hypertension (PAH) patients. Conducted at a single center in Amsterdam, the study found that the use of e-learning modules on nutrition offered a unique opportunity to positively influence
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,
Small enough to fit in your back pocket, this credit-card sized guide is a handy tool to carry around and give people to read about pulmonary hypertension, its impact on people’s lives and the aims of the PHA UK. Check this resource out on the PHA UK website at this link
The aim of this publication is to guide people affected by pulmonary hypertension through the process of notifying the Driver and Vehicle Licensing Agency, DVLA, of their condition, answer some of the most common questions, and help patients understand what to expect along the way. Click here to order the booklet from the PHA UK
We were drawn to some posts shared by the ANHP on LinkedIn to send positive messages to patients. It features: – Concise, engaging, and encouraging messages– Appealing, evocative, and fun visuals We have taken four of the posts as examples and here are the messages: We are going slow but we are moving forward (turtle)
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.
The UK Pulmonary Hypertension Association, PHA UK, regularly provides information to patients about possible benefits they can apply for. Today on Instagram the PHA UK published information about grants for driving licences awarded via the Motability Scheme. Being able to drive is an important way for patients to be autonomous and this is a very
Driving license grants for pulmonary hypertension patients in the UK Read Post »
As not everyone is comfortable talking on the phone the PHA UK has set up an e-support online service to assist with emotional wellbeing, practical queries and problem-solving, signposting and connections. Contact the PHA UK at support@phauk.org
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:
