Health Gazelle: Atypical Cystic Fibrosis

Atypical Cystic Fibrosis

I have a mild form of Cystic Fibrosis (CF), as does my oldest child. My youngest child and soon-to-be-Ex-husband are known carriers and the latest research suggests that known carriers have SOME of the traits of CF patients, but to a lesser degree (which fits with my observations of my family members). Most people know of the traditional form of CF as something which causes the lungs to clog up with "gallons of mucous" (an erroneous idea but not really within the scope of my comments here). You may have gotten fund-raiser requests from Sixty Five Roses, which is a name that derives from the inability of small children to pronounce "cystic fibrosis" -- it was a mispronunciation by a child and it stuck. Reference

The form of CF that I have was not discovered by genetic research until about 4 years before my diagnosis, so it is a diagnosis that has only existed for around 9 years (as of May 2006). Traditional CF has a life expectancy of 36 (or 33 or "28 to 30" depending upon which source you believe) and I was diagnosed the month before I turned 36 with "variant CF" or "atypical CF". My doctor -- a brilliant pulmonologist whom I respect for having a lot more brains than most doctors I meet -- informed me that "People like you don't get well. Symptom management is the name of the game." I replied "It may be true that I will spend the rest of my life fighting the NEXT infection. But This Particular Infection has to GO as it is Killing me." He looked at me like I had slapped him in the face.

I really didn't know why I took such a solid position at the time. I couldn't formulate an argument, I just knew he was dead wrong. It was only later that it consciously occured to me that my oldest child has the same thing I have and he had not been on antibiotics in over 3 years at that time, even though he was newly diagnosed. Obviously, that fact was influencing my thinking: If we could keep him off antibiotics without a diagnosis, surely we could get me healthier now that we knew why I was always sick. Since I have living proof in my own home (ie my son) that the doctors are wrong in their assumptions about what my prognosis is, I generally go looking for research which fits my understanding and experience of my disease rather than bowing to "conventional wisdom". Fortunately for me, cutting edge research increasingly agrees with my view of my problems.

As of this writing, my son has been free of antibiotics for more than 8 years and I have been free of them for about 2 1/2 years. He is not on any maintenance drugs and recently stopped taking digestive enzymes. I am no longer on any prescription drugs, though I do take OTC drugs regularly and I still use digestive enzymes. I take a lot less of those things than I used to take. I am adding this section to my website because people are beginning to write me and ask me how to help relatives of theirs with CF. I hope to some day write a book with a full explanation of what we have done to get well. But CF patients really can't afford to wait for that book: they need help NOW.

May 2006

Addendum:
My son with CF has been free of antibiotics for over 10 years. He has taken no medication at all in at least 18 months. I have been free of antibiotics for about 4 1/2 years. I got off digestive enzymes in July 2006. Currently, the only medication I take is gauifenisen (usually 400mg every morning, but sometimes more) and I keep dayquil in my desk at work which I take "as needed", usually once or twice a day, five days a week.

8 June 2008

Addendum:
I get asked sometimes "What is atypical cystic fibrosis?" Honestly, I don't know. The definition gets debated on various lists and seems to mean different things to different people. I describe my condition as "atypical CF" on lists because it's what my doctor wrote in my medical records and because it's what I was told was the politically correct thing to say after having the crap kicked out of me for saying "mild CF" on some email list. "Mild CF" is apparently some kind of political hot button in the CF community. In my case, "atypical CF" means I was diagnosed much later than usual (the month before I turned 36) based on medical history and sweat chlorides of 41. Initial blood tests turned up no known mutations. My insurance company denied my doctor's request for a more comprehensive (more expensive) test. Some people make a big deal out of the fact that my mutations have not been identified. I know other people with CF or with atypical CF who are not similarly given a hard time about this. I think the real reason that people make a big deal out of this is because I have gotten well and most people believe that isn't possible if you have CF. As I have said elsewhere, if you believe that "having CF = you cannot get well" then it just follows logically that "if you got well, you can't have CF". What also follows logically is that believing it cannot be done is a trap that will keep people from getting well.

21 June 2009

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