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Megan
01-03-2004, 11:59 AM
Having only recently been made aware of CF carrier status in my family, I am wondering what you 'experts', can tell me.From various medical sources, the official stance seems to be, that carriers do not have any symptoms at all. Is this true in ALL cases? If some of you or your parents who are carriers, have had some 'suspicious' lifelong symptoms, I'd love to know and if so, are there any consistent trends of symptoms?Thanking you in anticipation!Megan

anonymous
01-03-2004, 12:16 PM
Megan,Quite a few people who are carriers do have "symptoms" which are not necessarily CF symptoms. One example is sinus problems in carriers, or sterility in men. As research continues they are finding out more and more about CF carriers that do not have CF. It is just my opinion, and there is no research on it (I have asked), but I know a few carriers that have either ulcerative colitis or chron's disease. I often wonder if it is coincidence or something related to the CF gene.I will be curious to read your replies as well.

anonymous
01-03-2004, 11:18 PM
Megan,I can only talk about my own situation, which may or may not be the norm. My wife and I are both carriers and purportedly our chances of having a child with CF are one in four. Our first child and our second child were both diagnosed with having CF together. So, we were running 2 for 2. For our own reasons, we did not have any more children. Neither my wife or my self have ever had any type of symtom that we recognized. No one in either family ever had anything related to CF that we were aware of. I, personally have never heard of a carrier with any kind of a problem. Just our children! Our daughter died at age 18. Our son reached his 44th birthday this past November 1st. Although times have been rough over the years, neither my wife or I have ever been sorry. We had two beautiful children. Although our daughters life was short, she had a good life and all of us were thankful for what time we had together. We wait together to see how much longer our son will have. But, every day we do have is a joy! Hope this helps. Bill

Drea
01-04-2004, 12:07 PM
Megan,I have heard of some symptomatic carriers. Also, I have been told ,that there seems to be a correlation with asthma and allergy related problems in carriers. While he has never been diagnosed as having a "bowel problem", my hubby does have some digestive issues and is underweight. He can't seem to gain, no matter what we do. I have had frequent bouts with bronchitis in the past. I don't know if these things are just coincidences but it seems odd that lots of CF carriers run into these types of problems.Andrea

anonymous
01-04-2004, 05:46 PM
Hi, MeganI can only tell you my own experience as a carrier. I have chronic pancreatitis, most likely as a result of my mutated W1282X gene. I also have chronic sinus problems and asthma, which has been pretty bad, lately. In fact, I'm about to start my last week of a course of prednisone to try to get it under control. I have no idea if all of this relates back to being a cf carrier, but I would think there's a good chance.Hope this helps.Jill

Dea
01-05-2004, 12:57 PM
This is a subject that I believe needs more research....I have 2 copies of the delta F508 mutations....so of course...my mom carries 1 copy as well as my dad. My mom has never had any problems of any "CF like symptoms". However....my dad has had chronic sinus problems for as long as I can remember. My mom also told me that as a child..he always had colds. Maybe coincidence.....I dont know. Just thought I would share.Dea

anonymous
01-06-2004, 09:26 AM
Thankyou so much, Bill, Andrea, Jill, Dea and Anon for your responses to my question. It certainly sounds like a topic ripe for researching. Perhaps it comes down to, some carriers having parallel but minimal/reduced characteristic CF symptoms and some not - due to as yet, undiscovered causes.Megan

anonymous
01-09-2004, 03:49 PM
Hello all, I am a Carrier of delta F508 and i have the disease like other CFer's and worse! Scientists should reconsider the issue of CF carriers!

anonymous
01-13-2004, 02:01 AM
Hi All,Having just been aware of Cystic Fibrosis in my family (as mentioned in previous post), I had my test for Carrier status done last week. I should get the results next week.I am interested to know whether I am a carrier (regardless of the fact that I have been unable to have birth children), because of the lifelong chest problems I have had - starting as a constant cough from a couple of months old, to pneumonia and collapsed lungs on several occasions. Needed lots of posture and percussing as a child. Prone to bronchitis and chest infections as an adult. Have asthma also. Have been prone to 'mysterious' liver problems and been in hospital twice for resulting jaundice.Maybe all these symptoms are unrelated to CF, but if the carrier test is positive....I will have my suspicions. One other brother and mother have had similar chest/asthma/liver problems. No pancreas problems at all.

anonymous
01-13-2004, 02:14 PM
Do you know which test they did? If they did Genzyme, it only tests for the 87 most common mutations. Ambry is much more comprehensive & tests the whole strand (there are something like 1000 mutations). If you had Genzyme testing & it was neg, you still could be a carrier, or even have cf for that matter. If those tests all come back neg and you also have sinus problems, you may consider asking to be tested for Primary Ciliary Dyskinesia. It has a lot of the respiratory problems associated w/cf but is caused by improperly functioning cilia and does not cause the gi symptoms. It's more rare but also underdiagnosed. Treatments are very similiar to those used for cf.

anonymous
01-13-2004, 02:15 PM
Forgot to add, PCD is also associated with infertility.

anonymous
01-13-2004, 09:25 PM
Thanks for that info anon, regarding PCD, I'll follow it up!My request slip for the test only says, 'CF mutation screen'. It has been authorised through our Children's Hospital CF Unit. I have a feeling that the lady who spoke to me, on the phone said, that they would do a reduced test, for about 10 mutations. My brother has only just found out through testing, that he carries the delta F508 mutation. His first grandchild was born with CF. So primarily, they are looking to see if I carry the dF 508, I suppose.Megan

anonymous
01-20-2004, 09:47 AM
Hi All,As a follow-up to my previous messages, I received my results of the CF mutation testing, on Friday. The genetic counsellor said that I did carry the delta F508 mutation and again reiterated that, if I was 'only' a carrier I would not have any symptoms. My mother's test came back positive too. Other members of the family have yet to be tested.I read an article written by two doctors the other day, which stated that some of the things to look for in the history of an undiagnosed person with possible CF - apart from asthma and bronchopulmomary symptoms, are <u>pleuritic pain</u>, <u>erythema nodosum</u> <u>and other unusual rashes.</u> These things jumped off the page at me, as they are all things I have had either regularly or intermittently.Any thoughts?

anonymous
01-20-2004, 03:55 PM
I have CF myself I am aged 37, live in Scotland, and have my own son aged 16 who doesn't have CF but is obviously a carrier of it. I can only say he is so healthy it's unbelievable at times. I do not think (personal opinion here) that carriers of CF have any symptoms of Cystic Fibrosis whatsoever.Keep wellRose Marie

anonymous
01-20-2004, 07:35 PM
To the original poster, if you have any doubts, request a sweat test. Around here, it's only about $40 -50. Even if you had to pay 100% out of pocket for it, to me, it would be well worth it. The other option is to request a full screen through Ambry. Have you seen the actual results of the testing or only received the news from a dr? If you read the actual results, it gives % odds that you could still have another, unidentified mutation (ie have cf). Unless it was the Ambry test, they can't exclude cf 100%. (costs around $500).

anonymous
01-20-2004, 10:13 PM
Thank you for that suggestion, I may ask for the sweat test. At this stage I have only received a phone call from the Genetics Clinic at our city's Children's Hospital. The written report should come, by mail, this week. I'm assuming that the Ambry test is something done in the United States. I am in Australia so I would need to check out the equivalent test, if necessary.Megan

anonymous
01-21-2004, 04:49 AM
my husband and I have a cf daughter and are really healthy people, we don't even have a regular doctor and my husband has never been on antibiotics. I have heard that carriers sometime have exhibited health problems, it could perhaps be related to the mutation that is passed down? We went on to have three more children and as far as we know only the youngest is a carrier, (genetic testing wasn't being done when the two oldest were born) anyway she has been the healthiest of all my kids....... go figure. I know big families are not the norm with cf children and if I can answer questions or help anyone in the position of considering more children I'm open. It was a really tramatic and difficult thing to go through as a young married couple.e read

anonymous
02-04-2004, 02:35 AM
This thread really made me wonder. I was diagnoised with a peptic ulcer along with IBS. I also have severe allergies and asthma. I dont know what mutation of the CF gene i carry, my son was diagnoised with CF when he was 4. But my ex is healthy as an ox without any symptoms at all. I wonder if thats why my son was diagnoised with the mild case, just having pancreatic problems mostly with very minimal lung involvement. If course as he has got older, he was diagnoised with diabetes. Its just amazing the things that im learning from this board. Makes me happy that my son was born at a time when technology made it possible for him to live longer. Maybe someday the CF gene can be isolated and babies of the future could be born CF free...wouldnt that be a happy ending?