World PH Day... and Beyond

Today’s blog was co-written by PHA staffers Megan Mallory and Renee Hockaday. They make the point that awareness doesn’t begin and end on World PH Day. It is an everyday necessity if we are to succeed in our efforts to achieve better lives for PH patients and all those living and working with this disease.

Yesterday, on May 5, pulmonary hypertension patients and their loved ones asked their social media friends around the world to join their fight against a life-threatening disease too often dismissed as asthma. Our PH community did this to mark World Pulmonary Hypertension Day, and we joined in a global effort to educate people about PH and bring awareness to this disease.

The fight for awareness does not end after one day. If we are to succeed, awareness-building must continue today and every day. If you missed out on yesterday’s social media blitz, we ask you to join this awareness movement today.

We have designed a World PH Day celebration social media pin with the message, “PH: A disease of many stripes,” to symbolize the diagnostic challenges and how PH comes in different forms, sometimes without a known cause and in other cases, associated with other diseases. Please share this pin with your social media followers to lead them to PHAssociation.org to learn more about PH, find healthcare resources and/or make an online donation.

Please post this social media pin with the following messages on your website, Facebook, Twitter and other social media pages. Or if you want, create a message of your own. Here are our suggested messages:

Facebook:
Pulmonary hypertension may look like asthma. But on average, the survival rate for those untreated is 2.8 years. For World PH Day, share this message and World PH Day pin with 5 people you love. http://owl.li/LVTdB

Twitter:
World PH Day: the other May 5 celebration. http://owl.li/LVTdB @PHAssociation #PHAWorldPHDay #ILovePHA #PHAssociation

Did you know?

Yesterday also marked the beginning of PHA’s Days of Unity. Days of Unity are events and fundraisers hosted by individuals and organizations to raise money to fight PH. The events range from small walks hosted by PH patients to an endurance bike race fundraising effort led by Team PHenomenal Hope, which raised nearly $117,000 for PHA as participants in the endurance bike event Race Across America in 2014. Our 2015 Days of Unity events will conclude on June 20 after Team PHenomenal Hope completes its 860-mile Race Across the West from Oceanside, Calif., to Durango, Colo. Learn more and get involved

An Unexpected Gift for Support Group Leaders

In honor of World PH Day, Pulmonary Hypertension Association support groups got a special delivery. Gerry Fischer, president of PHA Europe, donated books written by his daughter, PH patient Maleen Fischer, to support group leaders. Maleen's book,“Hope Springs Eternal,” is about her PHight with PH. On behalf of all of PHA support group leaders and members, PHA thanks Gerry and Maleen for this thoughtful donation!