Adult carriers of CF

makman

New member
I just wanted to know if any carriers of the CF gene have any related healyh problems to the disease. I'm pretty sure that science can not prove it, but I often have similar problems that my son had thru his ordeal with CF. I lost hime 2 years ago in Nov. Since he left me...I often wonder if all my breathing problems and sleeping disorders could be related to the gene I KNOW I carry. Just throwing it out there for other carriers.
 
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arabeth

Guest
There is such a thing as a "symptomatic carrier". It is a relatively knew area of research and hasn't been studied very extensively at this point. There is some information out there on the subject but it's few and far between. I carry the Delta F508 and have asthma, clubbed fingers, and some mild digestive problems. Coincidence or not, I don't know. My daughter's doctor has told me that there are definately people who carry the gene and have some mild symptoms of CF but they aren't usually nearly as severe as in actual CF.
 

anonymous

New member
I have a brother that they said was a carrier. I say it that way because he was told in the early 60's so I am not entirely sure how they tested him. He always had a problem with fainting - they told him that he was short of salt, due to being a carrier. It sounded strange to me, but at the time I was just a little kid and I believed all the doc's said. Now - I'm not sure that he is even a carrier.
 

MasonsMom

New member
makman,

My 7 month old son has been diagnosed as a "symptomatic carrier". He definitely has digestive problems and is on a high calorie diet as well as enzymes. Our CF doctor is watching him very closely to see how carriers can be affected healthwise. It wouldn't hurt for you to talk to a doctor since now they seem to be more accepting of the idea of symptomatic carriers. HTH

Velvet
Mason 10.5.04
 

EmilysMom

New member
I carry the DeltaF508 gene and my entire life, I have never been able to get enough salt. I oversalt everything.............
 

Dea

New member
My dad carries the delta F508 (I'm the CFer)...he has terrible sinus problems and he used to have breathing problems as well as a child. I still believe enough research hasnt been done on carriers to say they dont carry any symptoms.
Dea
31 w/CF
 

anonymous

New member
I also carry the Delta F 508 gene. I had asthma, sinus problems (suregery at 12) and pneumonia often as a child, but my sweat test was always negative. At age 29 I was sick for months, cultured pseudomonas and CT scan showed moderate bronchiectasis. The gene test confirmed only Delta F508.
 

anonymous

New member
I don't have CF but my son does. I think I might be a symptomatic carrier. I have Crohn's disease, which would explain many of my digestive problems but not all. I have had blockages in my small intestine, intense stomach cramps, malabsorbtion, etc... all very common in Crohns patients. However, I have had pancreatitis several times and even took Cotazym enzymes, I had my gallbladder removed due to "sludgy bile" and my fingers are clubbed (these are very rare in Crohn's disease). I don't have breathing problems except for asthma. I have never heard much about symptomatic carriers but I am interested in finding out more.
 

anonymous

New member
My sister had CF-- she died 6 months ago. I have also been diagnosed with Crohn's Disease, have had two bowel obstructions & my gall bladder removed. I have significant asthma that began at age 27 & has worsened over the last year. I had a sweat test over 20 years ago. We were told that either me or my brother was "borderline"-- whatever that means, but given no additional information. I had a carrier screen when I was pregnant that came back negative. I often wonder if my health problems are related to CF, but have never really known how to address it further.

MDG
 

ngunning

New member
You may have CF and have one common gene, for which you were tested - - and then a second "uncommon" or new gene.

I was told I was a carrier - but now I'm told that I have CF - -I have the most common gene - and then another mutated or uncommon gene that they have JUST identified.

Get the full panel Ambry test - - there are so many new mutations and variations of CF genes.
 

ngunning

New member
You may have CF and have one common gene, for which you were tested - - and then a second "uncommon" or new gene.

I was told I was a carrier - but now I'm told that I have CF - -I have the most common gene - and then another mutated or uncommon gene that they have JUST identified.

Get the full panel Ambry test - - there are so many new mutations and variations of CF genes.
 

ngunning

New member
You may have CF and have one common gene, for which you were tested - - and then a second "uncommon" or new gene.

I was told I was a carrier - but now I'm told that I have CF - -I have the most common gene - and then another mutated or uncommon gene that they have JUST identified.

Get the full panel Ambry test - - there are so many new mutations and variations of CF genes.
 
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melleemac

Guest
Makman
I have twins with cf, deltaF508 (hubbys gene) and a mutation from me. I was diagnosed with chronic lung condition when the boys were four. I also was diagnosed with irritable bowel syndrome a couple of years ago. I had my gall bladder removed a couple of years ago due to gall stones. I have trouble maintaining a healthy weight at times, which has been put down to stress.
Mel
 
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melleemac

Guest
Makman
I have twins with cf, deltaF508 (hubbys gene) and a mutation from me. I was diagnosed with chronic lung condition when the boys were four. I also was diagnosed with irritable bowel syndrome a couple of years ago. I had my gall bladder removed a couple of years ago due to gall stones. I have trouble maintaining a healthy weight at times, which has been put down to stress.
Mel
 
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melleemac

Guest
Makman
I have twins with cf, deltaF508 (hubbys gene) and a mutation from me. I was diagnosed with chronic lung condition when the boys were four. I also was diagnosed with irritable bowel syndrome a couple of years ago. I had my gall bladder removed a couple of years ago due to gall stones. I have trouble maintaining a healthy weight at times, which has been put down to stress.
Mel
 
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