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Patient story

Debra Whelan

My story is a new one. In November, I began to experience dizziness while driving, which I attributed to an inner ear infection. In January, I began to experience numbness in my face which I attributed to an inner ear infection, but my dance instructor convinced me to call my cardiologist since I had a heart valve replaced 8 years ago. Now I am in the midst of the entire battery of tests. My echocardiogram showed a rise in pulmonary arterial pressure (PAP) from 19 in 2006 to 40 with mild diastolic insufficiency and a decreased ejection fraction (EF) from 65 to 55.

Before mid-January I was dancing ballroom and swing 15 to 20 hours a week. Now, I am only able to dance about 3 to 4 hours a week, and I’m unable to dance more than a couple of minutes at a time. I have given up ballroom, weight training and pilates. Currently, I only dance the slow West Coast, which is called the walking dance. The stress from the idea of not being able to dance is nearly unbearable.

 

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NORD

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.