Why Diagnose Pulmonary Hypertension Early

Faces of PH

Kristie Coulter
Kristie Coulter

"My PPH (primary pulmonary hypertension) came out with pregnancy in May 1999. I wasn't diagnosed until July of 2001. By then, I was blue from head to toe and could hardly walk."
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It takes too long for pulmonary hypertension to be diagnosed. The median survival rate without treatment is approximately 2.8 years, making the need to obtain a rapid and accurate diagnosis urgent. Unfortunately, the mean duration from symptom onset to a confirmed diagnosis by right heart catheterization is also 2.8 years. We are reaching patients too late in the process. Almost three-fourths of patients have advanced PH by the time they are diagnosed. Many become so functionally deteriorated that they have lost their jobs and are dependent on family and disability benefits.

The goal is to discover the disease sooner in the early stages so a treatment regimen can begin in order to slow the progression of PH. When patients are caught early in the disease (while still in Class I and II) they have improved chances for a better life and can often continue working. Unfortunately, the REVEAL Registry shows that patients displaying milder impairment are one of the groups who are taking longer to be diagnosed. We are working to change that.

Sources: Delay in Recognition of Pulmonary Arterial Hypertension: Factors Identified From the REVEAL Registry (PDF), Lynette M. Brown, MD, PhD, FCCP, et al (CHEST, 2011); PHA International White Paper, Pulmonary Arterial Hypertension: Recommendations for Improving Patient Outcomes (2011)

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.