Actually Making a Difference

I’m doing what I honestly thought was impossible… helping to make a positive impact on the lives of individuals. For me, the grand idea of “making a difference” was so overwhelming, that up until my involvement with PHA, I really didn’t know how it was even possible to make a difference. My work on grassroots projects has shown me that small things can make lead to positive change in an individual’s life… and that is incredibly satisfying.

A brief explanation of why pulmonary hypertension patients, caregivers and medical professionals comprise a special interest group…

As science advances, rare diseases move from terminal illnesses to chronic illnesses, creating new groups of people with specific needs. PH is under-recognized and misunderstood, which means PH patients struggle to maintain employment or go to school, receive medical insurance benefits or Social Security Disability benefits, travel and many other things which healthy individuals do not normally have to consider. PHA was created to end the isolation of living with a rare disease and it has evolved into an organization that seeks to empower constituents to fight back against PH by changing the way they and other recognize and understand the disease.

Getting involved in advocacy and awareness helps patients and caregivers re-take control of their lives after diagnosis. Something as simple as a patient telling her PH Journey on television or to a newspaper reporter can be a powerful moment. Having the power to tell your own story is something we often overlook. After a life changing diagnosis of a chronic, rare and life threatening disease like PH, having the courage to tell your story is a big deal.

I’m incredibly thankful to the PH community and PHA for giving me the opportunity to see that it is possible to make a difference. Grassroots activity has an immediate effect on those who are active, and it empowers them. I’m proud that I can help the PH community in their quest for hope and cure.

Question:  Is it always so easy to become caught up in missions of organizations? Is my love for the work PHA does unique? Do you find yourself also caught up in the work at your organization?