I’m Aware That I’m Rare: Anne Jung

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…