Patient-to-Patient Support Line Volunteer Profile

Stephanie LayerStephanie Layer

Diagnosed: 2000
Patient-to-Patient Support Line Volunteer since: 2009

What does being a Support Line Volunteer mean to you?

The reason that I volunteered was because I know the feeling first hand of how scary it is when you are first diagnosed with PH. You really feel alone, and no one seems to know what you are talking about. Everyone told me, ‘Oh honey, my mother or grandfather had hypertension for years and years, you just have to take a pill.’ But, oh how wrong were they! I thought if I could reach out and help new patients--this would be my chance to give back to PHA for all the support they have given to me over the last 12 years.

Did you ever have a memorable experience on the Support Line?

One time I was on the phone with a Chicago police officer named Bob. One day he called, and we talked for over an hour. He said he was never scared on his job, but now he is scared over PH. We talked many times and his wife even called me about issues with Bob. As it turns out, we found out we were both born on the same day and year. After finding out this coincidence, we called each other “birthday buddies.” I felt I kept his hope, alive and both he and his wife keep fighting PH.

What’s your best advice for others living with PH?

I try and find the right answers for each patient. It always warms my heart, when a patient reacts to me when I tell them I have PH for 12 years, and yes there is hope! I tell each patient, ‘This is not life ending, just life changing.’ We have to adjust a little, but we can still live a fulfilled life.

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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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.