Wednesday, May 22, 2013

Dorothy’s Victory: Remembering Dorothy Olson, One of PHA’s Founders

from L-R: Judy Simpson, Dorothy Olson, Pat Paton and Teresa Knazik














Dorothy Olson, a PHA founder, passed May 18 at age 88 after a long life devoted to helping other PH patients. The following tribute, written by PHA President Rino Aldrighetti, was shared at her memorial service on May 21.

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 seven years before completion of research at the National Institutes of Health (NIH) would show that, without treatment, only half of all PH patients would survive to 2.8 years beyond diagnosis. And it was 13 years before Dorothy sat around a kitchen table in Indian Spring, Fla., with Pat Paton, Judy Simpson and Teresa Knazik to found what would become the Pulmonary Hypertension Association.

Dorothy beat the odds, surviving for 35 years after 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 lonely and years-long search for other patients. She and Pat Paton, Judy Simpson and Teresa Knazik met around Pat's kitchen table in 1991 – not long after only 187 diagnosed patients had been identified in the U.S. without any treatments to help them.

The women began a photocopied newsletter – Pathlight – 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.

8 comments:

Jane said...

I didn't get to meet her at conference but I think I saw her a couple of times there.

I will always remember her calling me I believe at the beginning of 2012 after I had done a fundraiser for PH Awareness month selling buttons and donated $300 to PHA. I know this wasn't a lot compared to what other raise but for me it was great. She thanked me for my donation and she asked me about my daughter, Nicole, and we had a very nice chat.

I will be forever grateful for that as well as her founding PHA which has made a huge difference in my life and the lives of many, many others.

My thoughts and prayers are with her family during this difficult time. You will be truly missed.

Hugs:o)
Jane Northrop ~ mom to PH patient Nicole (18 years old)

Anonymous said...

I was blessed to meet Dorothy at Conference. She is the epitome of hope and courage. She may not be "here" but her life goes on through others.

Karen Janjanin, patient

Unknown said...

I am saddened to hear of Dorothy's passing. I am so very grateful for her life and all that she gave to the PH community.

Evan White said...

It is very sad to hear this, we are sending warm thoughts of love and sympathy to Dorothy's family. She always had a wonderful smile and kind word when greeted at both conferences I had the opportunity to meet her. The PH community will greatly miss her.

Evan White, caregiver

Anna said...

She is truly an inspiration to me. Because of her and the other founders I have someone to talk to, I know others who are experiencing what I am, and there are treatments that keep me alive. I am personally in her debt and am so grateful for everything I have received because of the work she and they did. Thank you Dorothy. I hope her story inspires many more patients in the future and we find a true cure, she will be honored in my actions.

Charlotte M said...

I had the honor and pleasure to meet and have breakfast with Dorothy at the 2010 Conference in CA. If it weren't for Dorothy there wouldn't be a PHA, a conference, and I wouldn't have gotten my life back as a support group leader after my diagnosis in 2005. PHA is most truly Dorothy's Victory and for that I am forever grateful. She will be missed.

HiVibe said...

PHA was there for me when I was first diagnosed back in 2000 and I will always be especially grateful for all of the support I received during those first few years of living with it. From my first online search—which was very scary until I found PHA—to the scholarships for conferences in Irwin, CA and then Miami, FL, I found I could depend on PHA and its services/events as THE source for honest, factual, yet encouraging information and social networking (before there was ever such a thing as facebook, etc. LOL). From sharing about Flolan treatments and lung transplants, to their experiences with Tracleer and Tracleer/Adcirca, PHA and its founders and members have led me through and have meant the world to me. God Bless Dorothy as her spirit lives on not only in heaven but in every thing she contributed to the world of PH and the world at large. Peace, Don Newman, Savannah, GA

Anonymous said...

I had the chance to work with Dorothy & Harry many times, along with other board members over the years.... Talk about one loving lady,she loved and cared about what she did.

God bless you Dorothy, I am sure you Bonnie and Barbie along with other are still helping out the people down here.