Hi, I'm glad I found this post, althought slightly dated. both my dad and aunt have/had CF. I am a carrier as well as my husband. Our kids have tested negative thru sweat tests but my 2 of my kids have rectal prolapse. This is very common among CF patients but carriers too?! I have bile duct (liver) issues, also CF related?! No one seems to research CF carrier effects. I hope a researcher will see this post and study this.
have you done the sweat test which is the true cf test to see if you have it?
I will repeat what everyone else has said... I am so glad I found this forum. I had been told by my mother that I was probably a carrier since I was a child. I found out definitively when I was pregnant in 2006. I had pneumonia in 2009, and now I do again. I have had pain in my side what I believe may be my pancreas for over a year now, but all my labs are normal. I am going in tomorrow for an ultrasound.... but I was starting to think I was just a hypochondriac or something. I am relieved I am not crazy.... but worried that there may actually be more issues to come in my future. Knowledge is power!! Hopefully, just knowing being a carrier can cause issues will help me resolve and prevent future problems.
I agree we need more info and research into cystic fibrosis.
Thank you all for sharing and helping me not feel so alone!!
My question that can't seem to be answered is ...ok, now I am a carrier and have had 6 cases of pancreatitis over the last 3 years and a mild chronic cough, heartburn and more often mucus expelled with coughs. My dr wants me to get more genetic testing done. I'm not having any children. What will this test show. Is there a medical treatment for the blockage of pancreas that will ease my pancreatitis frequency? Or is it just more information and nothing can be done anyway. I'm tired of wasting all this money and getting nothing to help my symptoms. Have had 7 MRI/xrays and 3 endoscopic surgeries this year alone in effort to id cause of pancreatitis.
My 33 yr old son just found he has CF and only has two recessive genes to pass on. But the good news is...IF his wife has two DOMINANT genes, they can harvest her eggs and collect his sperm and do INVETRO procedure. Then testing of the embryos can assure safe development of the child. It will be a carrier, but not the disease. Good luck...
i am 8 weeks pregnant and just found out i am a carrier of CF. i never knew about this in my familiy. i wonder though if a lof of my famiily are symptomatic carriers. i am waiting for my husband's test results before i tell anyone in my family about this, as i don'ot want to needlessly worry anyone about the baby. me and one of my sisters have several health problems that i wonder are from being a cf carrier. my sister who is in her early forties has osteoperosis. severe nutritional malabsorption problems. severe digestive issues. insulin malfunction that is different than classical diabetes. difficulty maintaining weight. inability to digest fat or fat soluble vitamins, gal stones, liver problems, frequent infections, i have similar issues but am overal much healthier , although i am also younger, just in my twenties. i hope there will be treatment made available very soon for CF carriers. if anyone knows a doctor or hospital that is willing to look into this please post online.
Both of my parents were carriers of CF. Two of my syblings died of CF. My three sisters were tested as carriers in 1972. Both my parents died of pancreatic cancer, my dad at age 80 and my mother at age 91.
I came across a research study from 2010 on CF gene carriers and pancreatic cancer:
Cystic Fibrosis Transmembrane Conductance Regulator (CFTR) Gene Mutations and Risk for Pancreatic Adenocarcinoma.
"Carrying a germline mutation in CFTR modestly increases risk for pancreatic adenocarcinoma. Mutation carriers also appear to be diagnosed at a younger age than noncarriers, with this effect seen exclusively among ever-smokers. Long-standing pancreatitis is uncommon regardless of carrier status."
My cousin has CF. I was tested for CF gene before getting pregnant and was told that I am not a carrier...but wondering if I may carry a different variation of the gene. My son and I both have thick mucus and digestive issues
Eric, good for you. You are so right. If more people identified as carriers had their symptoms treated like they should be, there would be less health problems and a more comfortable life to be led. Instead, symptoms are taken out of context and may not be handled properly. I am 53 years old and finally convinced my doctor to test me for CF. As "only a carrier", I have every symptom of full blown CF and have had them since I was 14. Each problem was handled differently than it would have if it had been known that I was a carrier much sooner. I am lucky to have a doctor who believes carriers can be symptomatic and since my treatments have changed, I have never been healthier and feel sooooo much better.
I had my first case of bronchial pneumonia when I was 2 years old. It became a nearly yearly illness after that, and I have been dx'd as having "severe acute bronchitis" several times since. The slightest cold or even sinus allergy and I produce copious amounts of thick, sticky mucous, and cough incessantly for weeks. Even when not ill if I laugh hard, run, or get over-heated I will start coughing up this mucous which is ever-present in my lungs. (I have never smoked in my life.) I have recently found out that I am a carrier, and that some carriers have symptoms. This is certainly evident in my case.
you can also find me on fb my name is Jessica Todd from PA
if you can't find it you can always look for me...Jessica Todd from Pennsylvnia, just message me requesting to be added to th site and I can do that also. Sorry I never checked back with this forum, I had to get a new email so I never knew anyone had contacted me or replied. But I would love to be able to discuss these kind of things with others.