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| 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.
and
