PAH: Championing your care

In this webinar, our mixed panel of patients and clinicians answer some of the most asked questions from the PAH community around championing their care.

Early diagnosis and recognition of pulmonary arterial hypertension (PAH) are crucial for improving long-term outcomes. Standardising care across Australia ensures that all patients have access to appropriate medications, clinical trials, and therapies.

Patients shared their experiences with PAH, highlighting the importance of support and knowledge. Patients emphasised the need for mental and physical adjustments, support from the Lung Foundation Australia and peer groups. Patients shared their journey of overcoming initial misdiagnoses and the importance of being one’s own advocate.

The webinar discussed the progressive nature of PAH, noting that while it generally worsens over time, appropriate management can help stabilise the condition and improve quality of life. They highlighted the importance of regular reviews and early intervention to address changes in the disease.

Exercise is essential for managing breathlessness in PAH. Structured exercise programs, such as pulmonary rehab, can improve outcomes. Patients should embrace breathlessness as a sign of physical activity and work with their healthcare team to find suitable exercises.

Long-term prospects for PAH patients have improved significantly with advancements in therapies. Combination therapies, including triple therapy, have stabilised many patients. Ongoing research and clinical trials offer hope for new treatments and better outcomes.

Traveling with PAH is possible with proper planning and precautions. Patients should discuss their travel plans with their healthcare team, undergo necessary tests, and consider alternative travel methods if needed.

Support services, such as those provided by the Lung Foundation Australia and peer groups, are invaluable for patients. These resources offer information, emotional support, and practical advice for managing PAH.

Overall, managing PAH involves a combination of medical treatments, lifestyle adjustments, and support from healthcare providers and peers. Patients are encouraged to stay informed, seek support, and actively participate in their care.