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Thread: My youngest cousin has cystic fibrosis? Should I be concerned?

  1. #1
    Junior Member
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    Dec 2017
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    My youngest cousin has cystic fibrosis? Should I be concerned?

    I am just curious. My mom just told me my youngest cousin has this condition. My question is how likely one could have it undiagnosed through their childhood? Because I just looked up the condition. I see it's pretty prevalent in general population to have the trait. The thing is I have dealt with something unexplainable for years now. I had pneumonia where I had to be hospitalized at 5. But I don't remember anything other than not wearing a coat that day. But I got sick again at 8. The thing is after that point I had a lot and I mean a lot of phlegm in that sickness at 8. But I got better but the phlegm thing hung around. Years later. I always have a lot of phlegm and people always say I have a bad cough. Then added to that I was always more fatigued as a kid. I didn't have a lot of energy. But growth I was ok with early on but it's hard to know because my mother is real small under 5ft can't gain weight ever under 100 lbs. At about 10 and up I had a hard time gaining weight. But like my mother I shot up in weight under 10 and then stopped growing from 10 on. I also had chronic issues with constipation as a young child to the point I had a situation I was so constipated at like 6 I was getting sick. I must say though that has somewhat improved since. Added to this I have found out I am anemic. I regularly would have a level anywhere from low 9 to a low 11. I took also a quantiferon test for tuberculosis and I had to do it over again because it wasn't negative. But second time barely passed as a negative. Which I later was told could mean there was some type of infection I might have with my lungs. On top of all that in the last years I've been getting sick at best every 6 months and when I say sick I mean like I have to lie in a bed for a whole week and can't really even talk because I'm too congested to make much sense. It was also really bad at my old job last year every time I worked there too many days consecutively I got really sick where I had to stay home and not work again. And the sicknesses had similarities to pneumonia. Like I remember at one point it seemed the slightest movement caused phlegm. I had spitting up blood but I have to say on occasion I spit up blood without a nosebleed or anything without being sick in any other way. All this year I have dealt with a lot of hospital visits being told I have signs of sinusitis (sp?) and congestion and then I dealt with also a recent nasal infection. Then I also have had an issue during the holidays usually but that's usually just a cold. I always know it's coming though no matter my environment in mid December been the case for the past 12 years. My question is I haven't told my doctor that I do have a relative with this condition? Or do I leave that out since she's just a cousin? Plus I'm not a child anymore and through some parts of my childhood I only got sick once a year. I even got food poisoned at 9 months with salmonella and I made it through that with medical treatment. At about 8 and after, I had the cough and a congestion issue since. On a normal day I was going to my dr. for a really bad headache last month and she told just by looking at the insides of my nostrils that I was congested. But the thing is that's my norm always has been for years. Also I was at a doctor for an allergic reaction to lactose and they did an x-ray for some silly reason I think she said she did an ultrasound on my stomach and lungs not really sure anymore there was nothing abnormal with my stomach as far they told me. Well should I tell my dr this or not? Do I make yet another appointment or not?

  2. #2
    Senior Member
    Join Date
    Sep 2016
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    125
    I wasn't diagnosed until I was 7 and I know some adults on this site who weren't diagnosed until they were adults or what we consider to be much later in life (not at birth). The symptoms you're describing, while yes people with CF suffer from them, doesn't really sound like you personally have CF. You could be a carrier of it, but that DOES NOT MEAN YOU HAVE CF. You are more than welcome to bring this up to your doctor and get tested to see if you have it, but my gut is telling me no. I know when other people find out that one of their loved ones was just diagnosed with CF that they start reflecting and freaking out wondering if they might have it too. It's also not as common to have it as you think it is, which is one of the reasons there isn't any government funding for us.

  3. #3
    Junior Member
    Join Date
    Aug 2014
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    23
    I was diagnosed at 23, my lack of weight gain was attributed to my high metabolism and hyperactivity, I had no idea my skin was more salty, and the mucus they thought was bronchitis, honestly I wouldn't have been diagnosed if it wasn't for my scoliosis. When my doctor tested me for CF, I had a friend swear I couldn't have CF because I was an adult and its diagnosed in infancy. I did have my sister think she had CF too when she got bronchitis one time, like Kenna said its not common to have CF, it can be common to be a carrier but all that means is you have the gene, you have to get the gene from both parents (carriers) to have CF and its a recessive trait. It can't hurt to mention to your doctor about your cousin's diagnosis as part of your family medical history, they can then make the decision on whether of not to test you. hope this helps

  4. #4
    Senior Member
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    Sep 2009
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    2,738
    I have 3 siblings, none have CF. I do however have had 3 cousins who have passes from CF and one living who has had a transplant.

    It should be important to you to know if you have CF or are even a carrier. Have your Doctor send you to an APPROVED CF CLINIC and be tested there.
    Male 77 CF undetected until age 47. (First symptoms at age 3) Delta F508 & V562I with one copy of Variant 5T. 100% PI. MAC, CFRD.

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