Gabriele, a 47-year-old Italian national residing in Brescia, bravely opens up about his personal journey with Chronic Thromboembolic Pulmonary Hypertension (CTEPH), aiming to raise crucial awareness within the pulmonary hypertension community. By sharing his experience, he hopes to shed light on this condition and its impact, offering support and insights to those who may be […]
From left: Monica, 12 years post double lung transplant; Pisana, 21 years; Samantha, 19 years; Meri, 18 years; Alessandro, 20 years; Veronica, 19 years. In the middle stands Erna, a remarkable woman who provided unwavering support to us and our families during our time in Vienna, both before and after our life-changing surgeries. All of
Salvador Calderón, a patient affected by Pulmonary Hypertension and a volunteer with the Foundation against Pulmonary Hypertension in Spain, has released his third book, titled “The Expert and Informed Patient.” This compelling narrative portrays the journey of a patient through all stages of pulmonary hypertension, highlighting the constant struggle to improve the quality of life
Samantha Ciurlini’s journey with pulmonary arterial hypertension began in 2005 when she received her diagnosis. Twelve years ago, she underwent a life-changing double lung transplant surgery at the renowned Vienna General Hospital (AKH). Prior to her diagnosis, Samantha had a passion for volleyball and even played at a semi-professional level. Despite the challenges she faced,
Eva Otter has been living with pulmonary hypertension for twenty years. She was diagnosed with pulmonary hypertension in 2003. At that time she was a busy medical laboratory manager in Lower Austria and also supported her boss at conferences, with publications etc.In this article Eva shares her patient journey over the past years, how she
Background In 1991, Kamil Hamidullah’s brother was the first person to be diagnosed with pulmonary hypertension in Turkey and, four years later, he was given the same diagnosis himself. Trading in his dreams of being a pilot, Kamil now heads up the Pulmonary Arterial Hypertension and Scleroderma Patient Association (PAHSSc). We caught up with him
Noriko Murakami is the President of PHA Japan and the mother of Yukiko, a young PH patient who had a lung transplant surgery from a live donor. The PAHSSc is grateful to Mrs. Noriko Murakami for having agreed to contribute to its magazine Nefes (The Breath ) with insights on lung transplantation from a live
Would you kindly give us some information about yourself? My name is Aryeh Copperman, I am the CEO since 2005 of Isreal’s pulmonary hypertension association. I have a BA in Accounting and information systems, and Masters Degree in Public Health, from the Hebrew University in Jerusalem. I am married with 4 children. My wife has
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
Disabilities are often not obvious to the eye, as the infographic of the cover photo eloquently illustrates (source: LinkedIn post by Pam Cusick, Senior Vice President at Rare Patient Voice). This the case with many rare and chronic disease patients, including pulmonary hypertension. Behaviours of people with invisible illnesses may be hard for others to
