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    • #17060
      Jenny Livingston
      Keymaster

      I can remember several conversations my mom had with doctors as I was growing up about the possibility of CF carriers having symptoms. She was always told that, no, that wasn’t possible and any CF-like symptoms in our non-CF family members were just coincidence. Years later, I had conversations with my own doctor who said that the medical community had begun to change their mind about this rigid stance and that, yes, symptomatic carriers could be a possibility.

      In more recent years, articles like the ones below have found that CF carriers are at a higher risk for many symptoms and conditions.  A 2020 study compared 19,802 CF carriers to 99,010 healthy non-carriers. They assessed the risk for getting 59 different health problems. CF carriers have a higher risk for 57 of 59 conditions.

      In my own family, GI issues, sinus issues, and asthma have plagued many family members (to the extent that my dad considered being tested for CF at one point because he had so many symptoms; it was thought that he might have two mutated genes, not just the one we knew he passed onto his kids).

      Do you know any CF carriers who display mild symptoms of the disease? Do you wish there were more research in this area?

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      1. Cystic fibrosis. The Mayo Clinic website. Available at https://www.mayoclinic.org/diseases-conditions/cystic-fibrosis/symptoms-causes/syc-20353700. 
      2. Miller AC, Comellas AP, Hornick DB, et al. Cystic fibrosis carriers are at increased risk for a wide range of cystic fibrosis-related conditions. Proc Natl Aca Sci. 2020; 117(3): 1621-1627.

    • #17072
      Timothy Bransford
      Participant

      CF is such a broad spectrum.  I believe it has a massive footprint that that is still relatively unknown.  I’m lucky, it mostly impacts my lungs.  I seem relatively OK with the rest of my organs.  In fact, I’m pretty much a healthy person outside the FEV issue.

       

      I come from a large family.  I have 6 siblings and I am the only child with known active CF.  I was not diagnosed with CF until I was in my late-30s.  Over the previous 7 years before my diagnosis, I had lived and worked in the following cities/countries:  Mexico City, Mexico (3 years), Beijing, China (2 years), Khartoum, Sudan (1.5 years).  The common denominator for these countries is they all have horrible air quality/pollution.

       

      Mexico City is in the belly of an extinct volcano crater.  A constant pressure layer pushes everything to the ground.  The smog (mostly automobile exhaust and some industrial pollution), airborne dust, and airborne fecal matter (sorry to be gross) was so bad we could not see the sun until we drove out of the crater.  Then, it was brilliant sunshine and crystal blue sky.

       

      Beijing was a city shrouded in exhaust fumes and other air pollutants.  Remember the Olympics?  Burning soft coal was persistent during the winter/fall and particulate matter was pervasive in the air.  It was in Beijing that I first started to experience minor and sporadic bleeding.  I just thought it was sinus or something like that.  I also started to notice a slight oxygen deprivation sensation (something very new and mysterious to me at the time).

       

      Khartoum is in the heart of the sub-Saharan desert and often experiences massive “haboobs” or dust storms that literally turned day to night.  Breathing in this cloud of sand was like taking sandpaper to my lungs.  In fact, it was in Khartoum that I fell off the edge and plunged into massive hemoptysis for the first time.  Raging fever, precipitous loss of weight, and massive bleeding.  It was so bad I was air evacuated to Germany for intensive care.  I was dying.  My parents flew from Alaska to say good-by.  The upper-right lobe of my lung had a massive hole and blood was pouring out of it.  They thought it might be TB and gave me all the synthetic antibiotics available.  Fortunately, one of these antibiotics was Cipro.  It literally saved my life.

       

      It was only after I stabilized from this crisis and, 2 years later, started to experience the same symptoms that they look deeper and discovered I had CF.

       

      I strongly feel that, had I not lived in these 3 cities, I might quite possibly STILL not know I have CF.   I wonder how many people there are out there like me.  They live in clean environments.  They don’t subject their lungs to a massive assault year in and year out.   They live unknowingly with CF…

       

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