Must we always focus so intently on CF life expectancy?

With modern advancements in CF treatment, perhaps it's time to change

Jennifer Bleecher avatar

by Jennifer Bleecher |

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In this column, I want to discuss something that’s been bothering me for a long time, so I’ll just go ahead and say it: I despise the fact that the topics of age and life expectancy are such a prominent feature of the cystic fibrosis (CF) identity.

This may be a controversial statement, but it’s my personal opinion, and it’s been weighing on me for years.

I don’t mean to upset or offend anyone, and I’d appreciate feedback and other perspectives that might help me shed this abhorrence.

Growing up before the internet, I had only known one other person with CF. We talked on the phone and became pen pals, mailing letters to each other primarily about life beyond CF. About 10 years ago, I became much more engaged with the CF community online, and I quickly realized a pattern: Without prompting, most people introduce themselves by stating their name immediately followed by their age.

I was initially taken aback by this. It’s not how introductions are made in other situations I’ve experienced. In response, I followed suit, feeling awkward and confused. I felt like I had missed the memo about our ages.

I’m aware that sharing our ages helps us recognize the progress we’ve made in managing and treating our disease. CF was historically known as a fatal pediatric disease. When I was born in 1971, my mother was told that CF life expectancy was 12 years. It is now a life-shortening disease due to the progress in scientific research that continually pushes life expectancy higher. The life expectancy of a baby born with CF today is 50.

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As I joined various online CF groups and new friendships grew, I became more desensitized to this practice. But I still notice a vague discomfort in the pit of my stomach when it happens. How has it become such a conditioned response for our community? And why does it bother me?

Another common theme in our community is that we don’t want CF to define us, which I agree with. But by including our ages in our introductions, are we being true to that statement? Or is it a mixed message? Or are we merely sharing information? Maybe we’re sharing hope and inspiring each other with how long we have lived. Do other groups with life-shortening diseases also do this?

Banishing the stress and anxiety

It is upsetting to me that information about life expectancy is so easily accessible now compared with when I was young. Our minds absorb that information, which affects us mentally, emotionally, and physically through the mind-body connection. I believe the stress of that information wreaks havoc inside our bodies. Anxiety and depression is common in the CF community, which doesn’t surprise me, considering we’re living with the information that our lives won’t be as long as those who don’t have CF.

My mother did not share this type of information with me when I was growing up. I realize now what a gift it was for me not to carry that psychological burden, especially as a child. Everyone’s CF is unique, and I find great hope in that. Many factors determine how quickly CF will progress, how we will recover from exacerbations, and when we will die.

I realize that many people have died from CF way too early, including my first CF pen pal. It is horrible, and those of us who are living fight extra hard in honor of the ones we’ve lost. But here’s the thing: No one is guaranteed tomorrow, not even the healthiest person in the world. So why, in addition to the health battles we endure, should the CF community  carry the constant psychological burden that our lives may end early?

I am so thankful for the hard work, dedication, funding, and research that’s happened to find new treatments and one day, a cure. For these reasons, I understand and appreciate the use of life expectancy as a marker of progress. We have come very far since I was born.

But for the children and adults now living with CF, I hate that life expectancy is still such a prominent and focused feature of this disease. It creates fear. It is a constant reminder of our medical fragility and the unpredictability of the disease we fight so hard to live with.

As we continue to move forward with CFTR modulators and genetic therapies, my hope is that we as a community can break free of announcing our age in connection to our identity with cystic fibrosis. That way, we will no longer have to be so focused on how many years we have survived and instead talk about how well we live with it.

Again, I would love to spark a discussion in hopes of calming my displeasure with this topic. Please share your thoughts in the comments below.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.


Marsha Warren avatar

Marsha Warren

My parents also never shared life expectancy of cystic fibrosis with me as a child; however, they did participate in a CF support group and as I continued to age, I noticed that everyone who I came in contact with ended up dying. It was difficult for me to process that my life expectancy was going to be cut short. I will be 68 years old this year. Most everyone I knew (my CF doctors, too), I have outlived. So I very much feel the same as you, there seems to be an inordinate amount of emphasis placed on age. I think that both lung transplants and Trikafta is the reason. It’s like a victory lap and a possible way of communicating success.

Jen Bleecher avatar

Jen Bleecher

Thank you Martha for sharing your comment. That must have been so difficult experiencing in the support group. I’m sorry to hear you had to go through that. The life expectancy focus is a double edged sword, and I just wish that this amazing community who has to endure so much physically, didn’t have to live with such a heavy mental load as well. I hope we could have had a more open-ended prognosis, but I guess they only knew what they knew at the time we were young. And maybe that is starting to happen hopefully for those just being born and diagnosed. Thanks so much for being part of the conversation Martha!

Kathy Gunter avatar

Kathy Gunter

Jennifer, you make a great case with so many truths! Yes, we are probably way too focused on life expectancy, but as you can attest directly, it is all we have known. Here it is...your dreaded subject: I am one year older than you! My situation was slightly different and has for all the good, bad and in between shaped my entire life. My sister died from CF at the tender age of barely 16 when I was only 11. A short time later, I was finally diagnosed. Wanna take a wild guess how old I thought I'd live to be? If you guessed 16, you nailed it. However, the docs (in front of me) gave an expiration date of age 20ish. Now at 53, I figure who really knows? I'm certainly not running marathons nor am I nearly as energetic and optimistic as I once was about what might save me (I have rare mutations, so modulators are not an option). I have simple goals both short term and long term. The long term goals are absolutely influenced by what I hope and/or think my life expectancy might be. Today, I hope to make it to 55. If I make it to 55, I'll try to shoot for 60 somehow (maybe genetic therapy will get me there?). I truly wish it weren't the case, but it is. I'd rather enjoy each day without that shadow always ever-present in my thinking all of my waking hours (and even some night dreams). I don't even fear death. Sometimes I even daydream about how glorious it will be to take that "long nap" from which I never wake. I fear leaving my loved ones behind. I fear the pain they will endure. I am still fighting so they won't hurt as much or feel alone. And yes, I think all people who have life-shortening illness think in terms of expectancy. I think it might simply be the nature of the beast.

Jen Bleecher avatar

Jen Bleecher

Kathy, thank you for your thoughtful comment. I can relate to your feelings in general, and also having rare mutations. I was always watching and feeling very hopeful for genetic therapy to get here as well, before needing my transplant. I will be hoping they will arrive asap and do wonders for you. I am deeply sorry for the loss of your sister, and for you being told at such a young age about your possible life expectancy. Maybe you are correct,…it may just simply be the nature of the beast. But it is the part I dislike the most. One day at a time, it’s all any of us can do it my motto. Take care and keep hope alive Kathy

Ron Holdren avatar

Ron Holdren

When I found out I had CF I was 40 yrs old and now I am 70. Truly I never thought I would live past 45 but I guess God has other plans for me.

Jen Bleecher avatar

Jen Bleecher

Wow Ron, that’s wonderful! I surely agree God had other plans for you! Thank you for reading, and commenting. Stay well and God bless!


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