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Carrier .. symptoms of cf

Hi everyone .I'm looking for some advice really .is anyone here a cf carrier displaying symptoms of cf .I think that I'm definitely getting some and it's concerning me

  1. I’ve known I carried the Delta F508 mutation for many years, but was told I did not have CF. However, I now need to wear supplemental oxygen at night. I am 54 years old, a non-smoker and am a healthy weight. I can’t walk up a set of stairs without having to rest afterwards. My older sister was recently diagnosed with adult-onset CF and I am wondering if that is what I have, too. I have my first appointment with a pulmonologist in two weeks so I am hoping they will be able to help me get some answers. I’ve had to take allergy meds and a nasal steroid daily for years. I also take an herbal supplement daily to help me digest food. I am definitely wondering if these things are actually due to CF now.

    1. Very interesting! I am so sorry you have been struggling. I hope you get some answers at your upcoming appointment. Please keep us updated on how you are doing.

      Janeil ( Team Member)

    2. Oh really .This really makes me think .I'm not sure what mutation I have got to be honest, but I too are on a herbal supplement because I suffer with a fair bit of high stomach pain after eating.and have had problems for years with my stomach that was said was ibs also I have had lot of chest issues through out my life .pneumonia a few times as a child and through my pregnancies .I find I'm getting quite short of breath as well ,lots of arthritis and joint pain too .I wish I knew what mutation I have ,but I do know I really haven't been feeling as well as I was a few years back THANK YOU SO MUCH FOR REPLYING .I'm not sure what I should do about it though regards mandy

  2. I had DNA testing done and was told I was a CF carrier. I have had lung and sinus issues all of my life and they are getting worse. Over the years, I have told my doctors that I am a carrier, and they have totally ignored me. How can I get them to believe that I am having some CF symptoms?

    1. In my personal experience, I have yet to have a primary care doctor who knows anything about Cystic Fibrosis, or the CF gene carrier. It has been interesting to follow discussions at this Web site, regarding the most recent discoveries. As a Delta F508 carrier, I have to admit that a lifetime of sinus infections, GERD, irritable bowel disease, lactose intolerance, and dry eye might indeed be caused by the F508 gene, does indeed offer an explanation of the reason for these afflictions. I have yet to find a local primary care doctor who can further educate me as to possible side effects of being a Delta F508 carrier. I first became interested in genetic testing, after losing five CF nieces and nephews to symptoms of the disease, and then discovering that one of my sisters was diagnosed as a Delta F508 carrier. So, this is a critical family matter for me and my children, who are currently starting to have their own children. How can we better prepare our primary care physicians to treat patients with CF in their families, and patients who are CF genetic carriers, which apparently are very common in our population today?

  3. Hi , I’m a carrier of the Df08 mutation, I only found this out last year after taking the 23&me test because I have been so sick most of my life and have been diagnosed with dysautonomia. I suffer from mainly gastro problems, I suspect pancreatic insufficiency but I don’t suffer from pancreatitis. I think I’ve been avoiding it through diet. I pick what I can eat from the dissacaride free diet list. I can’t digest any carbohydrates bar fried potato (in limited quantities) I can’t digest fructose or lactose either, or nuts , eggs or beef . My symptoms when I do ingest any carbs or eggs is an immediate drop in blood pressure , weakness, fatigue, anxiety , depression , panic attacks etc. Other symptoms like migraine , irritated glaucoma in right eye, bloating ,heartburn, reflux, stiff joints like arthritis, very bad mid back pain, ear aches, are problems that arise from ingesting fructose, lactose, beef or nuts . I have a limited diet. I suffer debilitating chronic fatigue syndrome for years also which has been attributed to my dysautonomia. My lung test showed my lungs only working at 65% capacity but I rarely have a chest infection. My sweat test was normal but I have to have 6grams of salt a day to function with my dysautonomia and drink at least 3litres of water .My pulmonary doctor said carriers don’t have symptoms but I think this is a lil suspicious 🤨

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