I am convinced CF carriers do experience symptoms. My sister and I Just found out we are carriers of delta F 508 Cystic Fibrosis. She has a spot on her Pancreas which her doctor continues to monitor and I have really bad sinus problems all of my life (I am 62 years old). I just thought I was one of those people who got bad colds which tended to linger. My sinuses gradually got worse to the point that I was in constant pain and needed surgery to unblock the sinuses and scrape out the inside of the sinuses. This was done when I was 37 years old and was somewhat successful in that my sinuses were drained and the pain and inflammation went away but I still have sinuses that produce abnormal amounts of mucus and there is some permanent swelling in the sinus passages which affects the eustacean tubes. It feels like I have water in my ears. A doctor told me I had fluid on the inside of the eardrum so I do have water inside my ears which never goes away. My mother told me she had a cousin who died of a severe sinus infection so I suspect he also was a CF carrier.
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I am the oldest of 2 girls born to the same parents. My sister was born with both cf mutations, I with one. She had it bad, too. Passes away grace at the tender age of 12. I, on the other hand, was healthy. So it seemed... Since I can remember, I always was sweating for no reason. Profusely. I don't hold/shake/touch hands for ANY reason, as touch makes me sweat. Gross. I recall rewriting and rewriting papers in school, because my sweaty palm had dripped sweat all over my page, smudging the words. Turning in soggy paperwork to the teacher. Owning nothing but black shirts, and baggy shirts, and shirts made of material that dried quick. I turned goth-ish as a teen because, well, their dress code was perfect for me to hide my sweaty armits. I remember getting "chronic acute bronchitis " twice, thrice a year. In my early 20's, I became a cena, and as part of which, I had to get lots of different vaccines. These made me very ill, every time. And honestly, a lot of my coworkers, too, got sick. At 21, I became sick with a staph infection. This continued for a year, on and off,(more on than off), until I nearly lost my leg and died of sepsis. I have been diagnosed with hyperhydrosis, lupus, rheumatoid arthritis. I, at 34, have had 2 ministrokes/tia incidents. One a year ago, and one three months ago. I attribute at least SOME, not all, of my symptoms to the fact that I am a carrier. There's just not enough focus on us to get taken seriously in our claims... our maybe they want it that way... :'(
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my oldest son passed away age 20 on 2010 from cf complications and lung transplant rejection. My other son is "normal" and my daughter is a carrier. My daughter and I have had bad sinus problems all our lives. I have had 2 sinus surgeries, one before I knew I was cf carrier. If you are carrier and have symptoms, be thankful you do not have the disease, my son went thru hell
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I had all genetic testing, all negative. My daughter is constantly sick with daycare on resp tx steroids and everyother month antibiotics. She had gi problems only first 6-12 months. Her mucous so thick and sticky. Wondering if she could have cystic fibrosis
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I am a 49 year old male, and am a CF carrier. I have two daughters with CF and one without. I have been diabetic for over ten years, and though tests have shown for years that I had chronic pancreatitis, nobody tried to do anything about it. Now I read that having diabetes and Chronic Pancreatitis often lead to Pancreatic Insufficiency. Because of some gastrointestinal issues I am having I am meeting with a Gastroenterologist. My stomach issues very closely mimic my two daughter's with CF when it comes to eating fatty foods, such as meat. The doc I am seeing seemed to think it was also noteworthy that I had two kids with CF. I wonder why these symptoms are just now starting to really cause a problem, but after looking at this and other sites, it appears that the combination of diabetes and chronic pancreatitis likely has hammered my pancreas to where it is now insufficient to digest food without enzymes. My kids take a ton of enzymes. One more believer that being a carrier does seem to correlate with some of the full blown CF symptoms.
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My family history shows CF as a common trait. My aunt died at 12 and my brother at 11 years old.
We met other families afflicted with CF and joked that some day the scientist would link CF carriers with diseases similar to CF. Many experienced gastrointestinal issues, sinus issues, fatigue, pancreatitis illness and death.
No, what to do about it!!!! Eat healthily okay I can do that but is that it? Exercise is doable but very difficult. Amazing that I was a 3 sports athlete in high school and lettered in track and football in college.
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My grandson has recurrent pneumonia and respiratory infections. Severe asthma attacks to the point of low o2 sats. Multiple treatments with prednisone. He was diagnosed a carrier at birth. Are these things related to CF? Can they have effects of CF without actually having active CF.
Concerned Nana
Concerned Nana
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I got a DNA test that tested for carrier status and I found out I am a carrier for cystic fibrosis and It said I don't have the disease because I'm a carrier but I have lots of respitory issues. I have a constant cough that never goes away, chronic bilateral internal sinusitis that is incurable, lots of bronchitis and several bouts of pneumonia. I've been on antibiotics constantly and then sometimes I'm given allergy medical although allergy test don't come back with nothing wrong. Other people wonder what's wrong with me! The doctors can find nothing wrong with me and then I took a DNA test!
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I have MASSIVE mucus plugs, translucent thick mucus that stretches like saran wrap, pains in my left side that come and go randomly. I have to go to the bathroom 2-4 times a day, and frequently feel like I being choked and I cannot catch my breath, or catch a full breath because of the feeling my chest is being compressed.
I was tested for CF, sweat chloride counts of 69 and 72...but only 1 copy of Delta F508. So doctors tell me I don't have CF, and all these health problems are the result of something else...and I should go see a family doctor??
I was tested for CF, sweat chloride counts of 69 and 72...but only 1 copy of Delta F508. So doctors tell me I don't have CF, and all these health problems are the result of something else...and I should go see a family doctor??
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Wow
I thought i was going mad its not just me that think that been a cf carrier you can actually feel c**p ..i have had high liver enzymes for 10 years plus
Chest pains flem on my chest ..mucus horrible stuff
I suffer my pancreas and my big bowel
My grandfather had and died with pancreatic cancer
Im trying to find out where i actually got my unaffected faulty gene from (carrier)
Im now having to have my children saliva tested ..because the genetics are saying its a 25 % chance that i could of passed it on
I did not have a guthrie test done when i was born 43 year ago
But my children did ..so im confused i have asked my parents to have the saliva test done they wont do it so looks like im on my own none of my sisters or brothers have it just me
Could i pass it on to my daughter any advice please
Because shes planning to start a family in april 2017
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Yes, It sounds like you do have CF. Sweat chloride test results of 69 and 72 are positive for CF (ie. over 60mmol/L). 1 copy of delta F508 was found, but it sounds likely that you have a second CFTR gene mutation that was not detected by the genetic testing. Not all mutations can be detected by genetic testing. You should see a family doctor and ask to be referred to a CF specialist. If you can't catch your breath - lung function test sounds in order.
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There are only 1200 known mutations currently. You may have a rare mutation in conjunction with Df508 given your sweat chloride. I would request a full genetic test for all mutations.
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Hi, I had a child with Cystic Firosis. He was 32 when he died after complications from a double lung transplant. Blessed to have had him for so many years. This past year, I have been experiencing extreme letargic/fatigue (but I do push myself), probems with bowels and severe stomach pains. More onset asthma attacks that last much longer than usual. I had asthma as a child, but everything seems to be progressing as I have aged. Just this morning I was wondering if because I am a CF carrier if these symptoms are related.I have always exercised, never smoked and eat healthy. I have been to my primary care doctor; unfortunately quick response is to expect things when you get older. I am 67 and don't buy this explanation. I thought it was an excellent idea to possibly start some kind of forum to discuss these possibilities. Thank you all for writing in.
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