HTaPFrance held its 5th Pulmonary Hypertension Patient Conference from March 10-12, 2023, in Valpré-Lyon. The Conference, which takes place every 3 years, was delayed because of the pandemic, and all the participants were therefore delighted to be able to come together again. The strikes in France made it a bit more complicated for some speakers to join us, but thanks to technology, we were able to offer eight remote presentations, including those of Prof. Marc Humbert on research and mode of action of the new treatments, Prof. Marion Delcroix on the changes in the ESC/ERS pulmonary hypertension guidelines, with a focus on the different groups of pulmonary hypertension, Prof. Laurent Savale who explained the diagnosis process in a first presentation, and therapeutic strategies in a second one. Dr. Xavier Jaïs presented on how chronic thromboembolic pulmonary hypertension is managed, and Prof. Damien Bonnet focused on pulmonary hypertension and congenital heart defects in adults and children. We also had a remote presentation about managing patients having undergone transplant, by Dr. Jérôme Le Pavec, and Prof. Eric Hachulla explained how to manage pulmonary arterial hypertension when one already has a rare systemic disease and/or an autoimmune disease, like scleroderma or lupus.
Fortunately, some speakers were also there physically, and presented on different topics including physical activity in pulmonary hypertension (Mr Jesus Calabuig Lopez, physiotherapist at the Lyon expert centre), how to better know and use one’s treatments, by Dr Marie-Camille Chaumais from the pulmonary hypertension national centre of reference and Prof. Pierrick Bedouch from the Grenoble centre of competence (both pharmacists). Three psychologists, one from the national centre and the competence centre of Nantes, allowed patients, partners, and carers to have discussions with their peers, and also brought their specific point of view in several sessions. Some nurses also provided us with their precious experience with issues such as how to live better with a pump, and how to take care of pain in the treatment with subcutaneous prostanoids. Our social worker was also there to address some problems that are frequent for patients and carers, like how to obtain social support and recognition for your handicap, how to organize yourself in terms of working, changing jobs, stopping work…
Besides this serious part there were som very friendly exchanges between the participants, facilitated by pauses and testimonies. For instance, Melissa, a young patient, had brought with her the photos she had made on the theme “invisible handicap”, so we could shocase them and she graciously accepted to tell the audience how she created this work, which won a prize of Université Panthéon Sorbonne.
A fashion show was also organised to offer ideas about how to dress when you are wearing a pump for prostanoid treatment. Our youngest model was only 11! At the end of the congress, this little model proudly presented to Prof. Humbert (in visio) a 20,000€ check for Inserm, the National Institute of Health and Medical Research, which he leads.
Fashion show with patients presenting different ways to wear a pump for infusion therapy