Patient/family member/carer stories – Page 2

“Regards croisés”, a video with testimonials from pulmonary arterial hypertension patients on intra-venous 24/7 prostanoid treatment, by the French pulmonary hypertension association, HTaPFrance

On the occasion of the 2022 edition of the Pulmonary Hypertension Awareness Day, on May 5, HTaPFrance released a short film titled “Regards croisés”, which presents three people who currently have or have had epoprostenol treatment intravenously, using a pump and a centralised catheter. They share their experience with the pump in day to day […]

“Regards croisés”, a video with testimonials from pulmonary arterial hypertension patients on intra-venous 24/7 prostanoid treatment, by the French pulmonary hypertension association, HTaPFrance Read Post »

“Mut im Herz”, Brave Heart, by Jennifer, a pulmonary arterial hypertension patient

My name is J and I am 27 years old and come from near Bamberg. Since 2006 I have been suffering from “Idiopathic Arterial Pulmonary Hypertension”. I was 11 years old when I received the diagnosis. At that time I was on a skiing vacation and all of a sudden I started having trouble breathing.

“Mut im Herz”, Brave Heart, by Jennifer, a pulmonary arterial hypertension patient Read Post »

Gerry, a patient advocate for pulmonary arterial hypertension, on Instagram

Gerry is 32 year old, mother of 2, military wife, living in Florida. She was diagnosed with idiopathic pulmonary arterial hypertension (IPAH) and congestive heart failure (CHF) in Sept of 2018. Since her diagnosis she says she has felt the draw to share her story so that others can find hope and inspiration from it.

Gerry, a patient advocate for pulmonary arterial hypertension, on Instagram Read Post »

“PH Human”, a JanssenWithMe platform provides support resources for people with pulmonary arterial hypertension and features a number of real-life experiences from patients

PH Human, part of the JanssenWithMe digital platform, was created in partnership with the pulmonary hypertension patient community and is dedicated to supporting people with the condition. It has a particular focus on pulmonary arterial hypertension (Group 1 WHO classification of pulmonary hypertension). It helps share real-life experiences from people living with pulmonary arterial hypertension

“PH Human”, a JanssenWithMe platform provides support resources for people with pulmonary arterial hypertension and features a number of real-life experiences from patients Read Post »

Rosie’s “Breathtaking Story”, submitted by the Belgian French association HTAP Belgique

Rosie Matthysen was a pulmonary hypertension patient and a patient advocate. She was the founder of HTAP Belgique, the Belgian francophone pulmonary hypertension association, one of the founding members of PHA Europe. In this touching video poste on the PHA EUROPE YouTube channel Rosie tells her story and tells us about her life with pulmonary

Rosie’s “Breathtaking Story”, submitted by the Belgian French association HTAP Belgique Read Post »