Marlene’s Story of Living 86 Years With CF

At 86, Marlene Pryson may be one of the oldest individuals living with cystic fibrosis. During her long life, she has dedicated many years of service to helping CF families as a CF clinic coordinator and family liaison.

| 6 min read
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Douglas N. Homnick, MD, MPH
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Persistence, resilience, and strength of character can overcome many obstacles in life. Marlene Pryson, 86, probably one of the oldest individuals living with cystic fibrosis, certainly possesses all of these characteristics. I've had the privilege of knowing her as a friend and colleague for over 30 years with Marlene having served as CF clinic coordinator at Michigan State University, Kalamazoo Center for Medical Studies for 25 of those years.

Marlene's early life was difficult. She was born to divorced parents on July 17, 1935, in Otsego, Mich., moved around the state for several years, and was finally abandoned by her mother at age 11. After a brief stay with her aunt back in Otsego, Marlene found herself, again, on her own. With a fortuitous chance encounter with a kind Otsego High School chemistry teacher, she was directed to a boarding house for women where she lived until graduating from high school, doing various odd jobs to support herself.

When asked how these early life experiences prepared her to deal with life, Marlene said, “It taught me how to survive a lot of situations … and accept things that are given to you that you can't change.” She memorized the Serenity Prayer and says she still lives by it. (“God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” Rheinhold Niebuhr, pub. 1951).

After high school Marlene went to work as a secretary for the same chemistry teacher, now a principal, and -- in the course of her work -- met her first husband. Her second child, Brian, born in 1953, had difficulty gaining weight and was hospitalized for failure to thrive with the ultimate diagnosis of CF.

Marlene said that when she first heard the diagnosis, she heard “citrus fibrosis” and thought he had an orange juice allergy.

When Brian's pediatrician explained the CF diagnosis to her with its limited life expectancy at that time, she fainted.

Eventually, Brian gained weight when given enzymes and was placed in a mist tent. Not one to accept the inevitable, Marlene took Brian to see Dr. Harry Shwachman in Boston who confirmed the diagnosis of cystic fibrosis and referred her to one of his fellows, Dr. LeRoy Matthews, at what was then Babies and Children's Hospital in Cleveland, where Brian received CF care throughout his life. Marlene wanted Brian to experience life fully -- which he did, including touring the country on his motorcycle at age 16.

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Marlene with her son Brian and daughter Cissie.

“Life is experiences. You can live with no experiences, but you're not alive. You just exist,” Marlene said. “If you have experiences -- good or bad -- it makes you alive. The good ones you enjoy. The bad ones you can cry about. That's my philosophy in life.”

One night, despondent over the illness of her young child, Marlene decided to call Dr. Elizabeth Kubler-Ross, famous for her writings on death and dying. She reached her in the middle of the night and “Liz” comforted Marlene. On another occasion, when Brian could not fit into regular toddler pajamas, she contacted the Dr. Denton Woolen Sleeper company. Wylie Denton had special pajamas made for Brian.

I first met Marlene when I came to Kalamazoo, Mich., in 1986 for an interview to join a general pediatric practice and to establish a pediatric pulmonary program. Marlene was serving as an administrative assistant and a liaison to 10 CF families. She was my most important interview, and we hit it off right away, conspiring to build on the CF clinic run by the pediatricians. Later, we both joined an academic practice in town -- Michigan State University, Kalamazoo Center for Medical Studies -- and Marlene officially became the clinic coordinator for the CF clinic, as well as for other specialty clinics.

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We eventually obtained accreditation as a CF teaching, research, and resource center with over 100 adults and children with CF. Marlene continued to serve as family liaison providing many fun-filled adventures for CF families including picnics, parties, and fundraising walks and other events. She also helped with many research projects, including patient recruitment, undertaken at the Upjohn Jasper Clinical Research Unit in Kalamazoo, often with my own children serving as controls.

For many years we suspected that Marlene may also have CF due to her chronic cough, but all sweat tests that we did were either normal or equivocal. In 2004 we were able to show two mutations by genetic analysis that confirmed her diagnosis, and she began intermittent care in the adult CF Center at the University of Michigan.

Marlene says that her CF diagnosis was truly “the happiest day of my life” because she felt that a 69-year-old with CF could bring hope to CF families.

Marlene's selflessness extended to many years of CF advocacy -- both in the clinic and beyond. She obtained funding from the Knights of Phythias to make tables for postural drainage and from the leagues of Kalamazoo bowlers to cap children's teeth stained by tetracyclines. Marlene worked with then U.S. Rep. Howard Wolpe to extend the Michigan Crippled Children's program (now Michigan Children's Special Health Care Services, MCHCS) insurance coverage for children above 18 years, and became an advisory committee member to MCHCS. She organized many family educational evenings and brought in knowledgeable outside speakers.

Marlene served as CF clinic coordinator, as well as coordinator for other state-sponsored Children Medical Services specialty clinics until her retirement in 2018, following a heart attack and subsequent surgery. She is still active in her church's food distribution program and volunteers at the local elementary school and within her neighborhood. And despite some intermittent problems with bronchitis, Marlene continues to be active and interested in helping others. This includes her wish to be an example to CF patients and families of living life to the fullest despite the setbacks of CF and life itself.

Interested in sharing your story? The CF Community Blog wants to hear from you.

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Dr. Homnick served as CF clinic and CF center director and director of the Pediatric Pulmonology Division at Michigan State University/Kalamazoo Center for Medical Studies from 1989-2013. He was also the medical director of the Kalamazoo and Calhoun County, Michigan, Public Health Departments from 2010-2016. He is mostly retired but keeping busy giving COVID vaccinations and serving as the chair of the local community hunger-free coalition. He is also on the board of the local refugee resource collaborative as well as keeping close virtual contact with his three children and two grandchildren. He has very much enjoyed a long collaborative relationship with his close friend and colleague Marlene Pryson.

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