Thursday, May 23, 2013

Dorothy's Victory...

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.

To the pulmonary hypertension community, Dorothy Olson is a hero who will not be forgotten.  She lives on in our love and our gratitude

In her own words...

Here is an audio interview with Dorothy (November 2012) by PHA board member Steve Van Wormer.



  1. I am very grateful to Dorothy and her co-founders of PHA. My wife had PPH, but was able to live almost 13 years beyond her initial diagnosis (3 to 9 months), largely due to the ability to use the information provided by PHA to locate her primary physician (Dr. Lewis J. Rubin--now retired) and to provide access to the latest information for continued optimal treatment. My beloved Peggy died 4/18/13, virtually a month after her 71st birthday. I will be eternally grateful to PHA and to all of her caregivers for those years.

  2. Dear Dorothy,
    you have been such an example for us lot. I am so happy I met an exceptionnal and wonderful person like you. We, at HTAPFrance, who met you, will never forget you.
    Rest in peace,
    Melanie, Laure, and everyone here.

  3. Dear Dorothy,
    When I first met you, at the Minneapolis Conference in 2006, I couldn't believe that you had survived that long with PH . I had been diagnosed in 2001 and by 2006 I was having trouble believing that I really was still alive. Your story gave me hope that I too could survive long term and that example you set was a motivator to me and many other patients. Thanks to you there was 1 drug available at my diagnosis, without it I wouldn't be here, and I now realise just how much you and Pat and the other founders made this disease not just an unknown cause of death but a known illness and one with a treatment. Thank you for the fight you fought to get recognition of and research on this horrible disease we shared.
    Rest in peace, breathe easy and God Bless

  4. Thanks to Dorothy, an amazing woman, for all she did for the PH community.

  5. Rest in peace Dorothy! Good job done here on earth. You will reunite with my mom Juanita Anderson. she and I met you ,Pat and Theresa in 1990 and mom was transplanted in 91. She so appreciated as I did the late night calls the 4 page pamphlets known then as PPH. YOU GAVE US HOPE. Thank you for your giving of self which really has helped so many Tammy Chapman

  6. We are blessed with your life story. Enlighten my day. Mihai from Romania