Tell us about your symptom and treatment experience. Take our survey here.

caret icon Back to all discussions

Misdiagnosed

When I was one, my mom took me to a pediatric urgent care because I was filling every diaper with diarrhea. When it was my turn, they led us into a baby examination room, took my diaper off and laid my belly down on the counter and put a rectal thermometer in my butt. They asked her why she brought me in and while she explained about the diarrhea filled diapers, I had a particularly forceful diarrhea attack that shot the thermometer out of my butt and shattered against the wall as well as a spray of poop. The doctor suspected C.F. so he taped some gauze around my wrist to collect some of my sweat for a salinity test and the results came back and confirmed the CF diagnosis. As time went on I developed some difficulty breathing from asthma and the doctors thought I had the respiratory CF. Along with the pancreatic CF it wasn't till after my stroke at 36, that I had realized that I had been misdiagnosed and I was able to start managing my CF symptoms by just taking pancreatic enzymes supplements. No more inhalers or nebulizers.

  1. Thank you for taking the time to share your story with us. It sounds like you have had a wild ride to get to where you are now. Are you interested in sharing more with us on what led you to learning about your misdiagnosis? A stroke sounds like a scary time but I'm happy to hear you were able to walk away with something positive, learning that you can better manage your symptoms. I'd love to hear more about your journey; always remember our community is here to support you as best we can! Sending strength and support your way! -Beth (Team Member)

    Please read our rules before posting.