Dec. 12, 2012 >> back to issue

PHers Raise Awareness to Lessen Misdiagnosis

Mayor of Hololulu presenting a proclamation

“I found out about your support group over the radio. I’ve been having shortness of breath for over a year and a half. I’ve been to cardiologists, neurologists and pulmonologists and they have not found a problem. There was never a mention of the possibility of pulmonary hypertension. My quality of life is impaired and I am frustrated.”

— Radio show listener who contacted Fort Worth PH Support Group Leader Diane Dauwalder after she spoke on-air about PH and her upcoming special event.

This November, when we asked you to spread the word that Sometimes it’s PH, our community members responded in a huge way! In 30 short days, PHers were everywhere — in news headlines, community events, government offices and online! Here are just a few of the ways PHers raised awareness this November:

Media:

Proclamations: PHers secured a record-breaking 77 proclamations declaring November PH Awareness Month. Some went one step further to use these proclamations to gain media coverage. Jen Cueva from Texas mentioned her proclamation from the governor of Texas in a letter to the editor in the Galveston Daily News, and Kelley Skumautz in Minnesota wrote about a proclamation from the governor of Minnesota in her neighborhood newsletter.

Congress: PHers came from as far away as the state of Washington to attend PHA’s Congressional Luncheon and ask their representatives and senators to support the Tom Lantos Pulmonary Hypertension Research and Education Act. Luncheon speakers included Dr. Gary Gibbons, the Director of the National Heart, Lung and Blood Institute at the National Institutes of Health, and Sen. Bob Casey (D-PA), the sponsor of the Senate bill.

Smiles for Shaye shared this photo on Facebook raising awareness about what young PHer Shaye's life is like with pulmonary hypertension.

Special Events: This November boasted more than a dozen special event fundraisers in support of PH research and PHA programs. Events included five Six-Minute Marathons. The events are designed to give special event attendees an idea what it’s like to experience the six-minute walk test PH patients regularly undergo as a part of their treatment.

Online: PHers around the globe found creative ways to raise PH awareness online including sharing photos, changing their status messages in social media and sharing their PH journeys.

Thanks to everyone who participated in Awareness Month this November! Read more success stories and check out photos from Awareness Month events.

 

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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.