Living with pulmonary hypertension

In the past 25-30 years enormous progress has been made in the field of pulmonary hypertension in terms of better understanding of the disease, approval of new therapies, advances in surgery, creation of expert centres, introduction of clinical guidelines and better disease management strategies. This progress has led to improved symptom management and reduced disease progression. However, life with pulmonary hypertension remains challenging for patients and their families and carers from a physical, practical, psychological and social point of view. Optimal management of PH requires a coordinated and holistic approach from a multidisciplinary team of HCPs and other specialists, including physicians, nurses, social workers, psychologists and patient organisations.

Difficulties in reaching a diagnosis

The patient journey, from first symptoms to diagnosis, can often be delayed, as pulmonary arterial hypertension is a rare disease with non-specific symptoms which may be mistaken for other common illnesses. Patients are often not aware of the existence of the condition and may not associate the initial symptoms with a potentially fatal disease. Lack of knowledge among the general public and health care professionals has been identified as a cause for major concern. Early detection and diagnosis are key to improving patient outcomes.

Everyday life challenges

Pulmonary hypertension has a significant impact on the lives of patients, in terms not only of physical limitations but also uncertainty about the future, the potential inability to continue working, the need for regular medical check-ups, the burden and complexities of treatments and, potentially, the need to undergo lung/lung-heart transplantation.

Mental health issues

A 2021study which included 217 patients with pulmonary arterial hypertension, found that over one third had mental health issues, mainly depressive disorder and panic disorder, exceeding the prevalence of these disorders in the general population. The study found that these mental health issues had a substantial impact on quality of life.

Role of patient associations

Patient associations provide invaluable support to patients and their families in many different ways including practical and emotional support and the provision of timely and easy-to-understand information. They also play a vital role in raising awareness of the disease and advocating for patient rights.

Patient and carer testimonials

Patient testimonials are a powerful tool in raising awareness and in gaining a true understanding of the impact of the condition on people’s lives. Different patients choose to live with the same condition in very different ways, of course, so that each story is unique and special. A number of patient stories has been uploaded to our PH Stories section.


“My life with pulmonary arterial hypertension: a patient perspective”, Hall Skaara, Pisana Ferrari, publication date Dec 17, 2019, European Heart Journal Supplements, Volume 21, Issue Supplement_K, Pages K54–K59

Patient engagement and self-management in pulmonary arterial hypertension”, Jytte Graarup, Pisana Ferrari, Luke S. Howard,

“Understanding the impact of pulmonary arterial hypertension on patients’ and carers’ lives”, Loïc Guillevin, Iain Armstrong, Rino Aldrighetti, Luke S. Howard, Henrik Ryftenius, Aryeh Fischer, Sandra Lombardi, Sean Studer, Pisana Ferrari,

“Prevalence of Mental Disorders and Impact on Quality of Life in Patients With Pulmonary Arterial Hypertension”, Karen M. Olsson, Tanja Meltendorf, Jan Fuge, Jan C. Kamp, Da-Hee Park, Manuel J. Richter, Henning Gall, Hossein A. Ghofrani, Pisana Ferrari, Ralf Schmiedel, Hans-Dieter Kulla, Ivo Heitland, Nicole Lepsy, Madelaine-Rachel Dering, Marius M. Hoeper and Kai G. Kah, Frontiers in Psychiatry, 31 May 2021




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