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of sufferers for those affected

24.11.09 Dietary intolerances for Fabry patients

On November 16th 12 people from the patient group gathered together for a pleasant meeting at the Closter (for women) Monestary (for men) Fahr. The discussions revealed that certain nutrients are problematic for us Fabry patients, causing either diarrhea or pain attacks.
It’s problematic that every patient reacts differently to various nutrients. In May Michel Dorthé recounted his experince with coffee which caused pain in his feet. Since making this observation he has eliminated coffee from his diet. I have also had my experience with coffee. About two hours after drinking it I experienced extreme pain thoughout my body. I have not drunk coffee for over 25 years.
The enzyme replacement therapy has fortunately almost completely eliminated my pain. However, in spite of this I avoid the following : coffee, milk, pork and mutton/lamb.
Cheese and yogurt are no problem even though they are milk products. Smokinng can also cause me to have pain.

Please contact me if you have had similar experiences. Perhaps we can learn to avoid certain pain or other unpleasant experiences.

Andrea Walther, Ex-President Fabrysuisse

Personal Experiences, that hopefully will be useful for other Fabry patients

Dietary habits: Since I was 18, I have made different experiences that have been beneficial to me in overcoming the negative aspects of Fabry and definitely improved my quality of life.
This time I’d like to tell you about my latest discovery. The end of last year I was on holiday on the Indian Ocean. A wonderful island, but unfortunately I found the coffee not to my liking. So I decided to go without coffee during the whole time I was there. During this time I experienced no pain in my feet. Upon returning to Switzerland, just to test it, I decided to go without coffee. My pain has disappeared and I am calmer.

My personal opinion : The nerves of Fabry patients are already stressed and therefore should be protected by avoiding coffee. I don’t know if a physician would confirm my experience, but I can already say : « It’s worth a try. Coffee isn’t really all that good anyway. »


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