AOP Health: PAH: Living Well – Against The Odds

May 5 is World Pulmonary Hypertension Day. A PAH diagnosis is serious but it’s not the end of the road.

World PH Day, 05.05.2026. When Brigitte Kaufmann could no longer climb the stairs to her apartment or carry her child, something was clearly wrong. Yet her symptoms were dismissed and even mistaken for claustrophobia. It took years before she received the correct diagnosis: pulmonary arterial hypertension (PAH), a rare and progressive disease affecting the blood vessels in the lungs. Today, more than 40 years later, her story tells a different story: one of resilience, medical progress, and hope.

PAH gradually damages the small arteries in the lungs and can lead to severe heart complications if left untreated. It occurs in only about 50 out of every million adults, making it a rare disease. But rarity is only part of the challenge. For many patients, this means that valuable time is lost before treatment begins.

Professor of Cardiology at the Medical University of Vienna

PAH is often diagnosed late because we cannot see the small arteries where the disease begins. We only recognize it when a significant part of the vessels are already lost.

Why early diagnosis changes everything

Brigitte Kaufmann knows this firsthand. She waited five years for the right diagnosis, years in which everyday activities became increasingly difficult. Her story is far from unique. “Diagnosing PAH requires a high level of expertise,” Lang adds. “We strongly recommend that patients are referred to specialized centers.” There, advanced diagnostic tools including echocardiography and right heart catheterization can confirm the disease and enable targeted treatment. Because once PAH is identified, treatment can begin and that can make a critical difference.

PAH Patient since 40 years

When I received my diagnosis, there were hardly any treatment options. But I trusted the doctors and I was right.

From rare to treatable

There is another side to the story: one of significant medical progress. Christian Gerges, Professor of Cardiology at the Medical University of Vienna, emphasizes that treatment options have improved markedly in recent years, an observation shared by patients like Ms Kaufmann. This progress is the result of decades of work by physicians, patient advocates, and the pharmaceutical industry, and with clinical trials playing a central role.

Professor of Cardiology at the Medical University of Vienna

We’ve moved from a rare disease with very limited treatment options to one with multiple evidence-based therapies supported by randomized controlled trials.

Living with PAH — and moving forward

Four decades after her diagnosis, Brigitte Kaufmann is living proof that PAH does not have to define a person’s future. With the right treatment and care, many patients today can achieve stability and maintain a good quality of life.

Senior Director Global Brands at AOP Health

Patients are not alone. There are resources and communities that offer guidance, support, and connection.

No one should face PAH alone

Medical treatment is only one part of the journey. Patient advocacy groups play a crucial role in supporting those affected. They connect patients, families, and healthcare professionals, provide reliable information, and create spaces to share experiences. These networks often become the bridge between diagnosis and living well with the disease.

A call for awareness

On World Pulmonary Hypertension Day, the message is clear: earlier diagnosis can change lives. Raising awareness among patients, families, and healthcare professionals is essential to shorten the time to diagnosis and to ensure that patients receive the care they need as early as possible. Because behind every diagnosis is a person and a future that can still be shaped.

About AOP Health

AOP Health is a global enterprise group with roots in Austria, where the headquarters of AOP Orphan Pharmaceuticals GmbH ("AOP Health") is located. Since 1996, the AOP Health Group has been dedicated to developing innovative solutions to address unmet medical needs, particularly in the fields of rare diseases and intensive care medicine. The group has established itself internationally as a pioneer in integrated therapy solutions and operates worldwide through subsidiaries, representations, and a strong network of partners. With the claim "Needs. Science. Trust." the AOP Health Group emphasizes its commitment to research and development, as well as the importance of building relationships with physicians and patient advocacy groups to ensure that the needs of these stakeholders are reflected in all aspects of the company’s actions. (aop-health.com)

Press Contact.

Mag. Nina Roth, MAS

Head of Corporate Communications
nina.roth[at]aop-health.com

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