The Diagnosis

Last week there was a story on the CF Foundation's facebook page about a woman that was diagnosed later in life, after a decade or so of not knowing what was causing her symptoms. Now days most people with CF are diagnosed either by a newborn screening (I think I heard that all states test for CF at birth now) or shortly into toddler-hood. Well it got me thinking about the story of my diagnosis.

I wasn't diagnosed with CF until I was 5. August 20, 1985 is the official diagnosis date according to my medical records, yep exactly 31 years ago today! Happy CFAnniversary to me ;)
I don't remember a whole lot about that time, so I asked my mom to tell the story:

My family circa 1982/83

"A friend had heard a radio announcement in 1982 about a "kiss your kids" campaign to detect a salty residue on your children to get them tested for cystic fibrosis. That is the first time I had ever heard of this disease. I took my beautiful little girl to the doctor to ask if he could run this test, because I had been detecting a salty taste on her face when giving her kisses. He said I was a neurotic first time mother and there was nothing wrong with my daughter. He was a doctor, I assumed he was right, and never gave in to my gut to force the issue. Jennifer continued to be the light of our lives and be our delightful baby girl, but she was sick frequently, had a hard time gaining weight, and always had"unique" bowel movements. We were blessed with another beautiful baby girl, and we grew as a family, moving a few times in those short years, as oilfield workers often did. I was taking Jennifer to the doctor for her check-up to get ready for kindergarten, and asked about her tummy......she always had a distended stomach on such a little body. He suggested we do a sweat test. I didn't know what that was, but said lets do it. My sweet neighbor, who worked in the hospital lab we went to, asked if I knew what that was for, and since I didn't, she informed me it was to test for cystic fibrosis. Well, I went to the library and looked up everything I could on CF.  Read everything I could get my hands on, and we cried and prayed more than I knew was possible. The tests came back positive, and our doctor sent us to the Children's Hospital in Denver, Colorado to the CF clinic they had there for further testing on her and her little sister.  Well, three years after my initial "neurotic" request, we found out my sweet little girl did have cystic fibrosis. I still kick myself every day that I didn't force the issue with my first doctor.....I let my daughter down, and I will always regret not standing up for her! I am so thankful for all the progress that has been made in the medical field. I'm so proud of my beautiful daughter for taking care of herself, and so thankful her husband is so caring and understanding and loving! I still pray for a cure and a miracle every day!" 

Me, Mom, and my Sister

My younger sister does not have CF, thank goodness. Neither of us can remember if she is a carrier, or if she was ever tested for that after the CF mutations were discovered in 1989.

As far as I know I am actually the only one in my extended family that has (or had) CF.