People who are diagnosed with CF late in life — I mean over age 50 — have different experiences from others in the CF community. We don’t just have different needs; we have different characteristics. We have different stories to tell.

I look back on my life, and on my family members’ lives. My sister, Dianne, was 10 years my senior. She was born in 1945, during WWII. There was no testing for cystic fibrosis. There were no newborn screenings.

Dianne had a lifetime of respiratory infections. My parents just dealt with it and took her to the doctor when she became ill. I remember my mother said she was just prone to them. As an adult, she smoked cigarettes and drank alcohol, as many of us did. It was common back then to smoke and drink — it was stylish and a sign that you were cool. She wasn't athletic or fond of exercise, but she always worked hard at whatever job she had at the time. I imagine she lost a job or two from being sick too often. 

When she was about 34, she became very ill, and no doctors locally could diagnose or help her. After suffering for weeks, my parents took her to a bigger city where she was diagnosed with a pseudocyst of the pancreas. She would never discuss the pain with me because it had been unbearable. I asked her about it once, and she told me to never speak of it again. They drained the pseudocyst, and she eventually returned home. 

A couple of years later, in the 1980s, she had a hysterectomy. And then, she lost weight. Since she was not overweight to begin with, she was literally skin and bones. The doctors said that can happen sometimes after a hysterectomy. What a strange thing to say. My mother and I told her to eat. She insisted that she was eating — she had an appetite and was eating but couldn't gain weight. Her doctors didn't think it was serious. She was close to malnutrition. She developed a second pancreatic pseudocyst, but this time it was dealt with in a timely manner. But she never gained weight. Dianne had three gastroenterologists, and nobody thought to investigate this. I wonder, was her weight loss from pancreatic insufficiency?

Her respiratory infections continued and occurred so often that she would “save” antibiotic pills for the next time she got sick. I wonder, did she have mycobacterium, MRSA, or Pseudomonas that were never treated?  

Sometime around 2003 or so, she called me for help. I went to her apartment and found her barely responsive, gasping for breath. She was transported to the hospital by ambulance. She had pneumonia in both lungs. She was in the ICU for two weeks, sedated, with a feeding tube. Still so dangerously thin. I didn't think she would recover. But she did. She was strong-willed, like most of us CFers are. Less than a year later, it happened again, and she recovered again.

Then in the fall of 2006, at age 61, as she sat in her recliner watching TV, she suddenly passed away. The police officer who found her said it appeared she died peacefully. I wonder if he said that to make me feel better about her sudden death. Did she suffocate on mucus? Did she struggle to breathe?  

I strongly suspect my sister, like me, had cystic fibrosis. She wasn't always the easiest person to get along with, but maybe that's because she didn't feel well most of the time. And yet, she pushed forward and worked to support herself. It was hard for her, and even though she may have caused some of those hardships herself, she didn't cause CF — it happened to her. She made it to age 61 without a proper diagnosis. She fought it and didn't know what she was fighting. She lived a lifetime of illness. 

I feel guilty sometimes because I was born 10 years later. I got lucky. I got diagnosed with CF at age 67. I am able to take a CFTR modulator. I got to live longer because of it. Do I maybe have survivor’s guilt?

How many other people are out there right now, whose cystic fibrosis symptoms are being overlooked? Even now in 2025, I encounter older adults whose doctors refuse to test them because they think they are too old to have CF. I feel an urgency to shout at the medical community, to anyone who will listen to my story, to my sister's story.

How many people have already died needlessly? Who in the medical community will step up? What organization will take the lead to better educate medical school students? How do we move forward and let the medical community know that we are never too old to be diagnosed with cystic fibrosis?

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