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CF Community Blog

The CF Community Blog is written by the community, for the community. It's about sharing our experiences, reflections, and perspectives — the good days, the bad days, and all the tough and wonderful things in between. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.

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Julie hiking in the woods and turning around to smile at the camera


A CF Diagnosis at My Age?

I was recently diagnosed with cystic fibrosis at age 67. Although I love my CF care team, I think it will be important for them to understand age-related care in addition to CF care — especially as the CF population ages.

A headshot of Julie Carel
| 7 min read
Anna Faith standing outside a hospital wearing a mask and holding her insulin pump.


How My Community Helped Me Cope With My Late Diagnosis

After managing various chronic symptoms my whole life, I was finally diagnosed with CF as an adult. As I struggled to cope with the news, my community rallied around me and taught me what true support looks like.

Anna Faith wearing a graduation cap and robe.
| 5 min read
Zachary holding his daughter Ruth at their annual volleyball tournament, Volley for the Cure CF


How I Navigated My Daughter’s CF Diagnosis

My wife and I were heartbroken when our daughter, Ruth, was diagnosed with cystic fibrosis as a newborn. But CF can’t stop us from being optimistic about what the future holds for our family.

A professional headshot of Zachary Wilson
| 5 min read
Gabrielle laying in bed with her mom while using her nebulizer


Figure Skating Helped Me Cope With My CF Diagnosis

My life was turned upside down when I was diagnosed with cystic fibrosis caused by a rare mutation, but my passion for figure skating has helped me stay healthy and happy through it all.

Gabby wearing a purple Great Strides t-shirt
| 5 min read
Debra Lase standing outside by a tree


Finding Out I Have CF at 69

I was recently diagnosed at 69 years old. Although it helped explain why I had been sick so often and gave me a new community, I can’t help but think about the lost time when my disease went untreated.

Debra Lase Headshot
| 7 min read
Kailey holding her child while he is doing his treatments with her daughter sitting next to her leaning on her shoulder.


Adapting to Life as a Parent of a Child With CF

Despite my knowledge of cystic fibrosis, I was scared when my son was diagnosed with the disease. I already had a toddler and worried how I would balance her needs with his medical care. Now that he is a year old, I realize my fears were worse than reality.

Kailey Prichard
| 5 min read
Black and white photo of a girl on a swing set in a butterfly costume.


Living in the Gray Area

Although she has two CF mutations, my daughter does not have cystic fibrosis. She has CFTR-related metabolic syndrome. She’s healthy now, but what about the future?

Álvaro La Parra-Pérez
| 6 min read
Madison in a hospital gown with her husband.


Receiving My CF Diagnosis at Age 20

I felt like I was living with a secret disease because I could never find answers to what was causing the lump of mucus in my throat or the frequent cough that would often embarrass me at school or with friends. Then, finally, I uncovered the secret when I was diagnosed with cystic fibrosis at age 20.

Madison Patterson
| 9 min read
Jennifer smiling with her son.


Coping With My Late Diagnosis

I was diagnosed with cystic fibrosis late; and the anger I felt was contagious for my son, who was dealing with his own diagnosis. But, I found support and am now focusing on the things in my life that I can control.  

Jennifer Albright
| 5 min read
Ainsley smiling at the hospital with an oxygen tube.


How Listening to My Body Led to My CF Diagnosis

At 26, I was in and out of the hospital with bouts of pain and coughing up blood, with doctors telling me I had pancreatitis. It took a trip to a new hospital — and advocating for my health — before I finally got my correct cystic fibrosis diagnosis.

Ainsley Doherty
| 5 min read
Spencer laying in a hospital bed.


How Pancreatitis Led to My CF Diagnosis

I had no idea what cystic fibrosis was — or that I had it — until six months of pancreatitis led to a diagnosis.

Spencer Barber
| 5 min read
Cambrey smiling with her husband and son.


Struggling to Process My Son’s Rare Mutations

I struggled emotionally after learning that after negative carrier and newborn screens, my son had cystic fibrosis. I’m now advocating for people with rare mutations.

Cambrey White
| 6 min read