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Post by Reid D'Amico

Getting Older with CF

I’m twenty-five years old. Yet, here I am about to tackle a piece that discusses my personal experience with “old age”. For those who are not familiar with CF, it is often classified as a life shortening disease. Despite recent medical advancements, the current life expectancy sits around the 40s. In college, I was a teaching assistant for a class on Aging and Health. In this class, we talked about how the ideal way to die would be to maintain all physical and mental health at peak condition until the time of death. However, we know that this is not the case. We see that as people get older, we see declines in physical and emotional health until death eventually arrives. Despite having a life expectancy nearly half of the average population, CF people often experience this decline in more severe forms. As people with CF age, infections in the lung become more difficult to treat and damage accumulates. This scarring in the pancreas also results in damage and can lead to CF Related Diabetes. The malabsorption in CF can also lead to osteoporosis.

As people with CF live longer, we see more consequences of the disease surface. Decades ago, people with CF didn’t live past a few weeks of age. As we’ve gotten older, we’ve seen many of the other complications mentioned above enter the CF population. As people with CF continue to get older, we hope that researchers and physicians can speculate and identify these issues before they make an entrance into the community. For example, how does liver health change as people with CF get older? How does brain health change, heart, GI system, you name it. We also need to think about how the human body changes under long-term post-transplant conditions. These are all questions that will be answered in time, but I hope the research communities can explore these concerns now instead of when they arrive.

In my own personal life, I’ve started to feel the impacts of being an adult with CF. Unfortunately, there’s no real way to parse our natural aging from aging with CF, but I believe the following are tied to CF.

  1. Fatigue: While this age-related manifestation of CF may be the hardest to uncouple from naturally getting older (starting a career, high pressure adult environment, etc), I’ve found my treatments leave me more tired than they did years ago. Even after a good night sleep, I find myself craving a nap a few hours after waking up. Fatigue and CF are known companions, and fatigue is known to become more present as CF progresses.
  2. Mental Health: When I was younger, I felt somewhat invincible despite having CF. I learned to so deeply compartmentalize my CF identity that I convinced myself that nothing was wrong. I was beating CF because of all I did. However, the older I get, the fewer friends I have with CF, and the more my social media newsfeeds become filled with prayer requests and health updates. As the vulnerability of CF starts to creep in, I find my mental health under pressure to understand my disease and to find happiness.
  3. Medications don’t work as well: Decline in therapy efficacy is also a natural part of aging in CF. Lung damage makes treating infections more difficult and over-use of antibiotics leads to resistant bacterial growing in the lungs.
  4. My body doesn’t work like it previously did: Muscles feel more tired post exercise, breathing is more shallow, harder to catch breath, etc. These are all generalizing issues that face many people with CF as we get older. We have to put more energy into our health, and as a result, the fatigue mentioned above creeps in and leaves us feeling lethargic and not running at a 100% rate.

One of my greatest hopes in CF care is a medication strong enough to help even us adults with CF. Our bodies have experienced years of trauma and damage, making our CF more difficult to ameliorate. A true cure for CF won’t just prevent the disease from progressing in pediatric patients, but one that will also help those with years of wear and tear.

Other posts by Reid D'Amico

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Our Community Column is a home for thoughts and opinions of members across the cystic fibrosis community. Sometimes serious, every so often lighthearted, but always engaging. It is our duty and privilege to listen to these stories and to share them with others.