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.

and

Holding true...

Are we who we started out to be?

Here - in its entirety - is the lead article from the third issue of Pathlight, published in November of 1990.  It was written by PHA co-founder Teresa Knazik and appeared under the title, Pathlight Grows...but it was about a lot more than that.  See what you think.

Welcome newcomers.  We now have 35 members and anticipate many more in the coming months. Over 100 copies of Issue #3 have been mailed, and many members are sharing copies with physicians and organizations in their communities, helping to spread the word about us.  Several of our new members are patients of Dr. Rich at UIC Medical Center, and I want to thank Lisa Kaufmann, RN for making copies of Pathlight available to those patients.

Would those who have so generously volunteered their time and talents please let me know what skills you can offer?  Soon we will form committees to begin working toward our goals, and we will need leadership and committed individuals to do this.  Please share any ideas that you may have to further our efforts.  We are hoping to incorporate before the end of the year, and our goals are:

...to organize a national patients' association with regional and local support chapters.

...to make Pathlight accessible to those who need it but cannot afford it.

...to help family, friends, and each other understand the pain and fear we experience - coping.

...to educate the public about our disabilities.

...to promote awareness among family physicians who can aid in early detection.

...to encourage research and become informed of research in progress.

...to form a "collective voice" so that our needs may be heard among those who have more well known disorders.

As I was reading this article, the new issue of PHA's medical journal, Advances in Pulmonary Hypertension arrived.  In his editor's memo, Dr. Richard Channick focused on the Scientific Sessions held at PHA's Conference this past June - and the Conference itself - and he writes:

Not surprisingly, the evolution of Conference perfectly mirrors the growth of PHA itself.  The iconic image of 4 people sitting around a kitchen table has morphed into a major organization that provides a dizzying array of services to patients, develops and implements many invaluable educational programs and funds both basic and applied research.  A remarkable evolution!

PHA has evolved but I'm very proud that, despite the changes in scale, we have stayed true to the thoughtful and solid foundation our founders provided.

Thanks to Pathlight's current editor, Megan Mallory, you can now read the first three issues of Pathlight.  When you get to the page, scroll down to Back to the Beginning.

A note about Pathlight...and a few more words

This morning, the first e-mail I saw was from John Hess.  John whose son is a patient has been a volunteer on a number of projects and activities over the years and, more recently, has joined the PHA board of trustees. 

He wrote...

Very rarely do I get down to sit down, relax and read. Tonight I had that luxury and did so with the most recent Pathlight.

As I read Pathlight, I'm inspired by the messages of progress and hope contained within it. I see PHA adding new services and programs with dedicated and inspired staff. I see committed caregivers and patients spreading the word about PH. I see healthcare providers suggesting strategies for transitioning PH children from pediatric to adult programs. I see an entire community of people, separated by geography but bound together by a common cause. It's inspiring and an amazing thing to be a part of.

Of course, it's always nice - and often moving - to receive notes like this.  It also helps us to know we are hitting our targets.  

Pathlight was edited by patients and one caregiver for the first 16 years of its existence. This began in May 1990 when Teresa Knazik, one of PHA's founders, launched the first issue (see left).  She served as editor through 1994. For awhile, she co-editied with another patient, Patricia Murphy. Then Pat's husband Mark Taylor Murphy was editor through 1996 when another patient, Jan Travioli, took over. Shirley Craig was the last patient editor, serving from 2000 to 2006.  

There was a one-word reason Pathlight editing moved from a volunteer to a staff role in 2006. Growth. By the time of its transition, Pathlight had grown to a 40 page per quarter publication.

The real challenge for PHA was keeping the community's voice loud and clear.  Christine Dickler became the first staff editor and began her task by extensively surveying and interviewing many patients, caregivers and medical professionals.  She learned that the key issue for patients was that they wanted to hear as much as possible about how others are living with PH.  That has been implemented by including members from throughout our community as subjects of stories and writers.  As a matter of fact, Christine segmented the publication with a Users Guide that appears in every issue.  The backbone around which each of the issues is built includes the following sections: PHenomenal Lives, Health Matters, Advancing the Cause, Community Classroom, PHenomenal Youth, and Family PHocus.  All are written to offer what our readers have told us is important to them. 

When Christine left the editor position (first to go to gradiuate school, then to return to lead our International Services department) Megan Mallory took over as editor.  She maintains the same commitment to getting the story of this community out in ways that bring value to those whose lives are touched by this disease. 

John, thank you for noticing.