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Thread: Is there anyone else who has CF and had a parent that also had CF?

  1. #1

    Is there anyone else who has CF and had a parent that also had CF?

    Just wondering how rare this is. Cf son of a CF daughter.

    I find it a mixed bag this knowing how I'll die and being able to roughly calculate the time of my demise.

    I was just thinking how horrible it would be to know the exact time and manner of ones own death.

    Right after I had that thought, my sister called me and said she'd gotten tested at university of Iowa at Iowa City and was positive for CF. She said I should go get tested too so i did.

    We both inherited the F508del from our mother and the d1152h from our father. our father died at 70 of throat cancer, and complications from the surgery (perforated esophagus allowed food into his lungs regularly). He might have had CF since people can live that long if they're homozygous d1152h. Although my father was a heavy drinker and a heavy smoker so it's likely he was just a carrier. His drinking and smoking would have killed him earlier if he'd had CF.

    But my mother, a very intelligent woman, who was frequently in Iowa City hosp., met a relative of my fathers who had CF. Hindsight makes me wonder; "Did my mother know and just not want to think about it?

    I think it is very unlikely. I know that if she had known she would have urged us to get a sweat test and genetic testing if that was positive.

    So I can only speculate that her denial was subconscious and prevented her from realizing that her children might also have CF. I am kind of happy she was spared that news. She was a trooper all her life, and I'm not sure how this would make her feel.

    My feelings are mixed.

    My mother expressed a concern that when we cured CF, if we eliminated the genetics entirely, then people like my mother and I would never again exist.

    We wonder, both of us, if this would be a good thing or a bad thing.

    I think that my life was/is wonderful and full. I worked 12 and 16 hours a day doing community organizing working on making the world a better place. In the end, I doubt my somewhat shortened time here will lessen the amount of life I've lived. It is possible that I've lived my life more fully than the average. One huge reason was my mother's attitude, She was vibrantly alive and that was something I emulate to this day.

    I feel like I have been alive, perhaps more so than ordinary, healthy, people who don't have the impetus to fully experience life that CF people have.

    We, who burn so brightly, burn out early. This is how I think about the people I've known that have CF. They're all amazing, bright stars.

    It would be a great loss to lose us forever I think.
    Male (but gender fluid).

    My mother was F508del/F508del and I'm pretty sure my father was a carrier of d1152h (although he might have been homozygous d1152h).

    So I'm F508del/d1152h diagnosed at age 49 several years after my mother died. First symptoms at 26, chronic pancreatitis at age 27. At age 29 a persistent cough and "over active mucous membranes" was what the doctors said.

  2. #2
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    With D1152H you should definitely look into getting Kalydeco!

    Are you going to an approved CF center? If so, I'm a bit surprised that you haven't already tried it, since it's been FDA approved for D1152H for almost a year.

    Kalydeco has been a real life changer for me and others with that mutation.
    Last edited by stephen; 01-30-2018 at 02:30 PM.
    76 Y/O with CF (D1152H and G542X) and Broncheiectesis.
    FEV1 Low 40s%.
    Started Kalydeco March 2014, Switched to Symdeko March 2018 - and doing very well.

  3. #3
    Quote Originally Posted by stephen View Post
    With D1152H you should definitely look into getting Kalydeco!

    Are you going to an approved CF center? If so, I'm a bit surprised that you haven't already tried it, since is been FDA approved for D1152H for almost a year.

    Kalydeco has been a real life changer for me and others with that mutation.

    I'm a bit surprised that you haven't already tried it, since is bee
    Hi Stephen,

    Thanks for replying!

    I am working on getting it as we speak.
    Male (but gender fluid).

    My mother was F508del/F508del and I'm pretty sure my father was a carrier of d1152h (although he might have been homozygous d1152h).

    So I'm F508del/d1152h diagnosed at age 49 several years after my mother died. First symptoms at 26, chronic pancreatitis at age 27. At age 29 a persistent cough and "over active mucous membranes" was what the doctors said.

  4. #4
    I have CF and my mom who has been showing symptoms only the past couple of years was just diagnosed not too long ago through two sweat tests. She has one copy of DELF508 and the other is unknown. Because of the unknown gene I am still skeptical of the CF diagnosis.
    AMBER 26yrs CF (Double F508DEL) Married
    CFRD, Double Lung TX 3-13-07, Kidney TX 7-2-07
    G-Tube, insulin pump, & cochlear implants

    Amber's Blog- A Creative Newmie

    God is within her, she will not fall -Psalm 46:5

  5. #5
    Quote Originally Posted by beautifulsoul View Post
    I have CF and my mom who has been showing symptoms only the past couple of years was just diagnosed not too long ago through two sweat tests. She has one copy of DELF508 and the other is unknown. Because of the unknown gene I am still skeptical of the CF diagnosis.
    hi Amber,

    thanks for replying!

    If she does have it it's probably a partially functioning one like mine (D1152h). People with two of those are typically diagnosed later in life.

    I was exhibiting symptoms by 29 because of my mother having two DelF508's, the combination results in atypical CF but my pancreas is mostly dead, although so far, I'm not diabetic just have to take Zenpep. Something made me ride my bicycle for my main transportation and that extreme exercise has really made life a lot better for me as I progress down the CF path.

    My problem is mostly psychological. Since I know what I'm in for, I'm probably having a bit more anxiety about it. They have assured me, "it's not your mothers CF" (So they said at the CF clinic at the University of Iowa).

    How old is your mom (if you don't mind me asking)?
    Male (but gender fluid).

    My mother was F508del/F508del and I'm pretty sure my father was a carrier of d1152h (although he might have been homozygous d1152h).

    So I'm F508del/d1152h diagnosed at age 49 several years after my mother died. First symptoms at 26, chronic pancreatitis at age 27. At age 29 a persistent cough and "over active mucous membranes" was what the doctors said.

  6. #6
    Quote Originally Posted by CFsonofaCFdaughter View Post
    hi Amber,


    How old is your mom (if you don't mind me asking)?
    She's in her early 50's. She does take the enzymes because of her GI symptoms. Her lungs are completely normal. She has unrelated heart issues. I guess I just can't fathom her being diagnosed at her age after absolutely no symptoms until recently. It's incredibly odd to me, but I'm sure there is scientific reasoning I don't understand.
    AMBER 26yrs CF (Double F508DEL) Married
    CFRD, Double Lung TX 3-13-07, Kidney TX 7-2-07
    G-Tube, insulin pump, & cochlear implants

    Amber's Blog- A Creative Newmie

    God is within her, she will not fall -Psalm 46:5

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