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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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Natalie using a nebulizer and vest in a hospital bed

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Chasing a Diagnosis

It took a lot of self-advocacy — and a lot of medical testing — before I received a diagnosis of CFTR-related disorder. Fortunately, my parents supported me as I went from specialist to specialist and finally got my diagnosis.

A headshot of Natalie Keas
| 6 min read
Abigail Gordon sitting in a wheelchair and showing off her pumpkin ostomy pouch cover.

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Coping With Gastrointestinal Problems

My path to a total colectomy was long and challenging. Now I want to share what I learned about self-advocating for necessary medical care and coping with a surgically created opening on my abdomen called a stoma.

Abigail sitting outside and smiling with her dog
| 6 min read
Christa Lux smiling and grabbing her hat in front of the Grand Canyon

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My Unexpected CFTR Modulator Side Effects

Advances in cystic fibrosis care have been life-changing for me, and I’m grateful to breathe easier with a CFTR modulator. However, I began to experience new issues in the past few years, and I am left wondering if it’s a side effect of the CFTR modulator or something else.

A selfie of Christa Lux
| 6 min read
Lin Marando taking a selfie in a hospital mirror with a friend

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I’m 24 and I have CF — and Bone Disease

I have faced numerous health challenges in my life, including a recent diagnosis of osteopenia. Despite this, I am resilient, grateful, and determined to take care of myself while finding strength in the cystic fibrosis community.

A selfie of Lin Marando showing off her tattoos and forked tongue
| 5 min read
Samantha looking out into the distance outside wearing a hearing aid.

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How Antibiotics Took My Hearing

The antibiotics used to treat nontuberculous mycobacteria made me choose between the risk of hearing loss versus the reward of better lung health.

Samantha Marino headshot
| 7 min read
Tania laying in her hospital bed after transplant.

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My Mental Health Post-Transplant

Being in and out of the hospital and unable to recognize my own body was taking a toll on my mental health. But after my liver transplant, my family stuck by my side and helped renew my positive outlook on life. 

Tania Romero
| 7 min read