I’m Aware That I’m Rare: Anne Jung

phaware global association®
4 min readMay 9, 2018

The phaware® interview

Anne Jung is pulmonary hypertension patient from Spain. She shares her CTEPH diagnosis story and discusses the advent of World Pulmonary Hypertension Day (May 5), which originated in Spain in 2012. May 5 was chosen as #WorldPHDay because it is the anniversary of the first child’s death in Spain from pulmonary hypertension as a result of toxic rapeseed oil more than 30 years ago. It has since been endorsed by PH organizations across the globe.

My name is Anne Jung and I’m from Spain. I’m a CTEPH patient and member of the National Association in Spain.

After suffering several thrombotic episodes, since the age of 19, I was diagnosed in 1997 with a rare bleeding disorder called hypofibrinogenemia. This is an combined defect that involves both low levels of fibrinogen, and impaired function of the small amount of fibrinogen, so and consequently, it’s little studied.

The symptomatology varies by person. There are persons who suffer bleeding and others, like me, who have a thrombotic tendency. At 23, I had another thrombotic episode, and it was bad without sequels. Since then, I have been followed up by hematology. In October 2010, I started to feel very bad, and with the slightest effort, my heart began to beat like mad, and I could not take three straight steps without getting tired, so I realized quickly that something was wrong, and I was very scared.

After 24 hours in the emergency room, and several tests, suddenly I was taken to the ICU with a diagnosis of massive bilateral thromboembolism with a pneumony in the right lung, and with a plural effusion. With treatment for the embolism, after four weeks in the hospital, I returned home, but I did not feel better. I still had the same symptoms as before my first admission. I felt very bad, and very tired. Walking and less up the stairs was impossible and I just wanted to lie on the couch, so I went to a cardiologist who, after an echo, confirmed me and sent me urgently to enter into the hospital again.

phaware global association®

Are You #phaware? Pulmonary hypertension (PH) is a rare, life-threatening disease affecting the arteries of the lungs. www.phaware.global