That journey sounds incredibly frustrating — and unfortunately, it's not uncommon. PAH is notoriously difficult to diagnose, and finding the underlying cause can take even longer. A structural heart issue like a hole in the heart is a known cause of PAH, and it can sometimes be overlooked even by specialists.
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That journey sounds incredibly frustrating — and unfortunately, it's not uncommon. PAH is notoriously difficult to diagnose, and finding the underlying cause can take even longer. A structural heart issue like a hole in the heart is a known cause of PAH, and it can sometimes be overlooked even by specialists.
The diagnostic delay with PAH is well-documented. Research shows that:
- One-third of people with PAH waited more than two years for a correct diagnosis
- Another 25% experienced delays of nearly three years
- Delays longer than two years are associated with an 11% higher risk of worse outcomes
A myPHteam member shared a similar sentiment: *"I also struggled to get a diagnosis. So, go to a pulmonologist right away. By the way, you are not crazy — this is a rare and difficult disease to diagnose."*
The complexity of PAH means that a team approach is often best. Pulmonologists, cardiologists, and other specialists with PAH experience working together can help ensure nothing gets missed going forward.
Now that the underlying cause has been identified, it's worth having an open conversation with your care team about how this changes your treatment plan — because managing the root cause alongside PAH can make a real difference.
June 15
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