International Faces of PH

Rocio Penagos Herrera, Mexico

Rocio PenagosI was born with an interventricular communication, and when I was five years old, I had surgery to fix it. I remember that throughout my childhood and adolescence I was always in a permanent state of tiredness. I could not run or jump like my siblings and friends because I got worn-out very quickly. My parents thought it was due to the heart surgery, and I grew up believing that I was constantly tired for that reason.

It was not until five years ago when, after several misdiagnoses, I was finally diagnosed with pulmonary hypertension. I remember that moment being very sad and difficult for my family and me. We received information about a condition that we had never heard of and did not totally understand, and we were told there was no medicine or treatment that might help me. I felt fear and sadness, and I think my parents felt that way also. None of us expressed these feelings out loud.

Shortly after I was diagnosed, I had the benefit and fortune of being selected for a clinical trial. At that time, I still had not accepted my PH and didn’t value the experience as I would now. It took quite a while for me to decide to get involved and learn more about this condition, and when I joined “HAP Mexico,” the PH organization in my country, I experienced a turning point in my attitude toward the disease. Since then, I realized that being informed helps me feel much better, and it helps my family to feel more hopeful. I also realized that much more needs to be done in my country, and we can only make necessary changes through an organization.

Now I have chosen to work through my feelings about my disease and give my support to others. By opening up, I’ve discovered that I receive perhaps more than I give.

Today I am more informed, I work for the cause, and I actively let go of my sadness. I have taken responsibility for my condition, and I’m much better. There is no question of good or bad luck; it is a matter of decision. Let’s make this condition an opportunity to help each other and live to the fullest.

 

 
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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.