I had a call from Dorothy Olson the other day. It had been awhile since we last spoke and it got me thinking about who she is as a person and the impact she has made...
In 1978, Dorothy Olson was diagnosed with what was then an almost unheard of disease, pulmonary hypertension.
This was two years before the first and only NIH registry (database) of the disease was launched and seven years before it reached its conclusion…ultimately identifying a total of 187 PH patients throughout the U.S.
In that environment, Dorothy reached out for nine years. She wrote to doctors; she wrote to NIH; she wrote to the National Organization for Rare Diseases. Her constant goal was to find other patients, to end her own and their isolation. In 1987, her persistence paid off. She located and began to work with two others. Their goal was to form a patients’ organization. By 1990 a newsletter – which Dorothy christened Pathlight – was begun.
I met Dorothy when I was hired as PHA’s first staff person in January of 1999. She was still active as a board member and volunteer in many, many ways. I remember her saying to me,
“I may have lost my sight but I can still talk on the phone. Use me.”
Dorothy is a regular volunteer on PHA’s Patient to Patient Telephone Helpline. One story I think illustrates the personal level at which she works. One night, some years back, she received a helpline call from a young woman who had just received her diagnosis of pulmonary hypertension. The doctor – as many physicians inexperienced in the field did and some continue to do – told her she had six months to live…and gave her our brochure.
The young woman rode down the elevator with her father, both of them devastated, and called the helpline from the parking lot. Dorothy was able to tell her she was talking to a more than 25 year survivor who had been given the same message.