|Dorothy with her granddaughter, |
Jackie, and Rino at Conference.
Dorothy Olson, one of PHA's four founders, passed May 18 at age 88. Diagnosed in 1978, Dorothy searched years to find other patients with whom she founded PHA. Our community thrived on her lifelong leadership, and we are grateful for all she did to fight PH. I wrote the piece below for her May 21 memorial service.
If Dorothy Olson's life could be described in two words, they would be Dorothy's Victory.
When Dorothy Olson was diagnosed with pulmonary hypertension in 1978 , it was 18 years before the first treatment for the disease. It was 7 years before completion of NIH research that showed that, without treatment, only half of patients would survive to 2.8 years. And, it was 13 years before Dorothy Olson sat around a kitchen table in Indian Spring, Florida with Pat Paton, Judy Simpson and Teresa Knazik to found what would become the Pulmonary Hypertension Association.
Dorothy beat the odds with her survival for 35 years from her diagnosis. But she did far more than live a full and complete life to the age of 88. She lived a life that made a difference. She made a difference for thousands and thousands of patients who had the same disease that she did. The difference she made will affect patients for many generations. It is her legacy.
This is her story...
When Dorothy was running through an airport to catch a flight in 1978, she was stopped by two stewardesses who saw that she was ready to collapse. They convinced her to delay her flight until she felt better. Several weeks later, she was admiring a bunting bird through her bedroom window...when she collapsed across her bed. She was hospitalized for five weeks with no diagnosis. Then, a young resident suggested it might be a rare illness - pulmonary hypertension - that had been mentioned in passing in one of his classes.
Dorothy had her diagnosis and she had her mission. She even adopted a new motto: "if it is to be, it must be me".
Dorothy began a long, lonely and years long search for other patients. When she and Pat Paton, Judy Simpson and Teresa Knazik met around Pat's kitchen table in 1991, it was not long after only 187 diagnosed patients had been identified in the U.S....without any treatments to help them.
The women began a xeroxed newsletter and gave it to their doctors, who gave it to patients. Soon they had identified many more patients than the 187 the federal government had located five years earlier. They began and staffed a volunteer telephone helpline to talk to patients whose lives had been turned upside down by a PH diagnosis.
One day, a young woman called the helpline. She was in the parking lot outside her doctor's office. She was standing there with her father and both were terrified. Her doctor had just told her that she had PH and that she had six months to two years to live. He gave her a brochure from the organization the four women had founded. The helpline was her lifeline. Dorothy told her she had been living with the disease for 18 years. The woman burst into tears.
The organization Dorothy co-founded grew over the years and she remained active, both on its board and on its telephone helpline. As Dorothy's vision declined, she told leaders, "I may not be able to see anymore but I can still dial a phone. Use me."
Today, the organization Dorothy, Pat, Judy and Teresa co-founded is recognized around the world and includes two medical organizations. The disease itself has as many or more treatments than all but two of the 7,000 rare diseases identified in the U.S.
None of that would have happened if Dorothy hadn't begun her search and spent the 35 years from the day of her diagnosis to the day of her death, connecting patients and fighting back against the disease that had intruded in her life. That is Dorothy's Victory.
In her own words...
Here is an audio interview with Dorothy (November 2012) by PHA board member Steve Van Wormer.