Diagnoised as an adult with rare form of cFHello, I am a 57-year-old woman, who was first diagnosed with a very rare form of CF. I was diagnosed at the age of 26. I then had to have... By NyzkiDecember 23, 2021Bookmark for later Reactions 0 reactions Comments0 comments
"Breathing Through A Straw" Cody & IIt has taken me over 30 years, a Covid19 Pandemic & the gentle cattle prod of my friend and publisher to tell Cody's story... my way of saying thank you... By markNovember 24, 2021Bookmark for later Reactions 0 reactions Comments0 comments
My life story with cfI was diagnosed with CF, two copies of delta f508 at two weeks of age; after I had a meconium ileostomy, several bad feet of intestines removed, appendix removed, and... By elizabethkNovember 16, 2021Bookmark for later Reactions 0 reactions Comments2 comments
CF Carrier with Daughter who passed away at age 26 from CFWhen I was young I had allergies to grass, mold, dust, cats, and dogs. In my 20’s I got allergy shots which helped and then took allergy pills as I... By 241250November 8, 2021Bookmark for later Reactions 0 reactions Comments0 comments
Survivors GuiltWith a diagnosis of only 1 gene at the of 10, mom and the family seemed at ease. Moving forward to 17 and the doctors somehow found the second gene... By drum.nerdOctober 21, 2021Bookmark for later Reactions 0 reactions Comments1 comments
CF Carrier symptomsI found out a few months ago (in my thirties) I am a CF carrier. Whilst I know that carrier symptoms cannot begin to compare to those who have CF... By Lou1686July 20, 2021Bookmark for later Reactions 0 reactions Comments5 comments
Johanna CF patient MomMy daughter's pancreas produces enough enzymes but apparently sometimes (not predictable) the pancreas produces enzymes in a too thick mucus that can’t pass to the bladder therefore it stays in... By johannaJune 14, 2021Bookmark for later Reactions 0 reactions Comments1 comments
My niece is now in her 40'sMy beautiful niece was diagnosed with cystic fibrosis when she was four years old. And she has been hospitalized many times. However, she has always been a fighter and hasn't... By lcwelkeMay 10, 2021Bookmark for later Reactions 0 reactions Comments1 comments
Cystic fibrosis carrierI always experienced from childhood continuous bronchitis attacks that lasted up to my early thirties but never was I given an explanation by doctors why was I getting so sick... By MarieApril 26, 2021Bookmark for later Reactions 0 reactions Comments0 comments
'The Miserable Drug'I purposefully took my time considering whether or not to publish a recent blog about my experience with Trikafta/Kaftrio as expectations of the drug are still so high and I’ve... By short4nowtMarch 18, 2021Bookmark for later Reactions 0 reactions Comments1 comments
MeI was diagnosed with CF at about 7 months old. And only have been hospitalized 2 times since birth. And the last time was 31 years ago. I grow up... By littlewesterFebruary 18, 2021Bookmark for later Reactions 0 reactions Comments0 comments
Diagnosed with CF @ 59I had Acute & Chronic pancreatitis was often sick. But no doctor ever suspected CF. Not even when I had a lung abscess from non-resistant staphylococcus aureus. Then in 2016... By lynnpoeFebruary 12, 2021Bookmark for later Reactions 0 reactions Comments0 comments
Trikafta miracleI'm Rosi and I'm a 22-year-old CF warrior from Bulgaria. In 2018 I was put on the waiting list for a lung transplant. Till 2017 most Bulgarians were undergoing this... By rositsamalinovaJanuary 20, 2021Bookmark for later Reactions 0 reactions Comments0 comments
My Time in QuarantineWhat is quarantine? Well, of course we don't want to get others' sick. So, in a way it is a humanitarian endeavor -- which I think is basically a good... By eliaslorJanuary 11, 2021Bookmark for later Reactions 0 reactions Comments0 comments
Diagnosed at 31 with infertilityI had the perfect 2019 - Just married the love of my life and began our hopeful journey into parenthood. After 6 months of trying, we decided to get genetic... By jamesg588December 30, 2020Bookmark for later Reactions 0 reactions Comments0 comments
Born too soonMy son Mark was diagnosed in 1976 and passed away from Cystic Fibrosis in 1980. There was very little treatment available for CF patients at that time and very few... By s00nerronDecember 17, 2020Bookmark for later Reactions 0 reactions Comments0 comments
My journey with 3 CF brothersFirst off I want to say my heart goes out to ALL battling CF survivors and loved ones that were taken to soon! I had 3 brothers with CF, my... By jeanne744December 14, 2020Bookmark for later Reactions 0 reactions Comments4 comments
Pancreatic Cystic FibrosisMy 12-year-old daughter was recently diagnosed with Pancreatic CF. It seems that her case is very rare. We are struggling to find an ideal diet for her. She has had... By johannaDecember 4, 2020Bookmark for later Reactions 0 reactions Comments0 comments
Would I have ever been diagnosed...if it weren't for....I wasn't diagnosed with CF and bronchiectasis till I was 26 years old, I am now 34. All my life, I was always the fun, energetic, out-going, down to earth... By ms-amy-lynDecember 1, 2020Bookmark for later Reactions 0 reactions Comments0 comments
My Grandson hasCFIn a blood test on the mother of my grandsons while she was pregnant we were told the twin babies had markers for CF. Twin boys were born on June... By cfgrandmaDecember 1, 2020Bookmark for later Reactions 0 reactions Comments0 comments
