Wednesday, June 06, 2007
Open Letter to Dietitians
An Open Letter to My CF Clinic Dietitian Regarding Supplements
As you well know, managing cystic fibrosis requires a great deal of effort on the parts of patients and the team clinic. Cystic fibrosis is so multi-faceted and complicated that not all treatment plans work the same way for each patient. You know this. This is nothing new to you, as you see a great many patients in the course of your workweek.
It seems that there is a lack of information or options to offer me. No matter what my food diary looks like, how much insulin I take, or how many pancreatic enzymes I ingest, your recommendations are always the same. Your first line of defense is to offer me Scandi, Boost, or Ensure. CFers have been given these non-palatable options for more than a decade, and I wonder, why aren’t dieticians like you getting the hint that we completely disdain these products?
I know that weight gain and proper nutrition is of utmost importance for me. Why else would I go to the trouble of observing my stools, keeping track of my caloric intake, and refilling my enzyme prescriptions? The problems I have with weight gain are probably not for a lack of trying, but for a lack of options.
Please do not offer me Scandi, Boost, or Ensure. Although these products may have a nutritional content label that satisfies all your requirements for vitamins, minerals, carbs, and calories, they fail to meet with my approval. They taste awful. Truly, undeniably awful.
The best thing you can do to help me and other CFers is to do some research as to what people actually eat. Ask around. Listen to your patients who are gaining weight and see what is working for them, but don’t just assume there’s one good answer for all of us.
Please, for all of our sakes, try to remember that supplements are not the answer. I will no longer take you seriously as a member of the medical community if you continue to foist such products on me.
It does seem to me like another example of Clinic mentality to me. One solution for all. But I am behind your open letter, maybe we should get a petition started. ;)