A Spoken History of PHA

Co-Founder Dorothy Olson speaks
about PHA

Our History

The Early Days

Dorothy Olson would always remember the day in 1978 that her life was forever changed. While admiring a bunting bird outside her bedroom window, she collapsed on her bed and felt paralyzed. Dorothy was hospitalized for over five weeks without answers from her doctors. 

In the sixth week, a young resident in the hospital meekly suggested he had read in a medical text about a rare disease called pulmonary hypertension. Although the doctors knew very little about the disease, they told her she would have only two years left. It was at this point that Dorothy developed her new motto: “If it’s gonna be, it’s up to me.”

Unsatisfied with the prognosis from her doctors and determined to find hope, Dorothy and her husband Harry moved to Florida. She gathered information about pulmonary hypertension from libraries, university physicians, and the National Organization for Rare Diseases (NORD). Dorothy was discouraged by the insufficient information available about PH and decided to search for other patients like her. She spent nine years making phone calls and writing copious letters in an effort to end her isolation.

Dorothy and Harry Olson

Finally, a few responses came in. The American Lung Association had put her in touch with another PH patient, Karen Cavanaugh. Unfortunately, Dorothy’s connection to her was lost after Karen moved abroad.

In the fall of 1987, Dorothy was contacted by a PH patient, Teresa Knazik. Teresa had been given Dorothy’s contact information through NORD and was eager to help. The two contacted another patient, Shirley Brown, and they began a PH pen pal group. Their goal was more than just friendship; they wanted to develop a patient association for PH. Their original name was the United Patient’s Association for Pulmonary Hypertension (UPAPH).

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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.