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Read conversations, start a discussion, and connect with others about cystic fibrosis.

hii

So I got cystic fibrosis and I've always wondered:why can't I smell?? I cant smell anything! it really sucks bc people are like: "oh my gosh that steak smells soooo...

My breathing and being in pain

I have alots of trouble breathing some days I have to make myself do a little house work but sometimes I think I'm going in circle and not seem to...

Carriers pain, cramping, gas, and constipation diarrhoea kidneys and duct inflamation

My elderly parent in the family with CF ( but has never been tested for carrier status ) As I understand it CF carriers, especially the elderly pancreas do not...

How Old Were You When You Were Diagnosed?

I'm just curious because I was diagnosed when I was only 6 months old, but my brother was diagnosed at 4. So, when were you (or your loved one) diagnosed...

Tilting therapy bed for physio for CF

I have a tilting bed supplied specifically for CF physio, but my boys only used it twice as they preferred the wedge on the floor. If anyone would like it...

General friendly question.

How is everyone doing?...

New to Trikafta-please respond

Hi. I just started taking Trikafta a week ago after the sickest year of my life. I started it while on levaquin and doxy. I culture pseudomonas and recently had...

when a cf child reaches 18 and transitions into being an adult

My husband and I would love to hear from parents/caregivers with a CF child transitioning into the adult world. We are nervous about all the changes we're facing. Insurance is...

Trikfta side effects

I’ve been on Trikfta since 2019 and I’ve developed cataracts on both eyes. I’m 41 years old which I was told this normally happens in children, adolescents, and young adults...

Will you take our In America survey and help others understand the true impact of cystic fibrosis?

The In America survey is now closed. To better understand the patient experience and realities of living with cystic fibrosis, we are fielding our Cystic Fibrosis In America survey. By...

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