Is My CF Mild, Severe or What?

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Classification may not be useful for the lay person and may be psychologically damaging if misinterpreted. The need to know and the desire to be fully aware of one’s health and its limitations is natural, but this information must be taken in context of a person’s understanding of CF and the disease course. So, don’t just ask for a score, ask what it means to you in the context of living your life. (See “Labels” below)

The Shwachman-Kulczycki score is one of four types of scores used to assess health parameters in CF. It is probably the most widely used. The system is based on four parameters that can be assessed by the physician from the history and physical examination (general activity, physical examination, growth and nutrition and chest radiograph “x-ray ). The disadvantages of this scoring system include the lack of data concerning pulmonary function tests, the role of different infecting microorganisms and the complications which may arise from the disease.

The other three scoring systems are:

  1. The Brasfield chest radiograph score is based on observations made on a chest (lung) x-ray and incorporates the Shwachman-Kulczycki system.
     
  2. The Taussig-NIH score uses pulmonary parameters which account for 75% of the score points. The Taussig-NIH score is more difficult to use than the Shwachman-Kulczycki score.
     
  3. The Cooperman score is a very simplistic system and is not widely used because it hasn’t been adequately evaluated in large numbers of patients.

Labels

One thing I’ve noticed in the past year is that quantitative measures such as pulmonary function tests, O2 saturation, chest x-rays, etc., are not always an accurate reflection of my health status. Even if my doctor is aware of this, it can be difficult to explain that I feel terrible and have her understand when the tests say I “shouldn’t be having any trouble” I have been having difficulty with even the simplest tasks– washing my hair when I shower sometimes completely exhausts me, maybe b/c of the arms over the head(?).

Anyway, this is yet another way these labels can be harmful. I think that because of my history and my test results, my doc has me pegged in her head as “a mild case.” She has said this to me on many occasions. While it’s nice to know that by all of her official measures my disease is not progressing any faster than usual, that doesn’t help one bit when I feel like *?!*%!

I can’t say I’ve never used a label, though. I think the difference is whether they are used as points of reference or as exclusionary terms.

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