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Old Tue Dec 28, 2010, 11:32 AM
akita akita is offline
Join Date: Nov 2010
Posts: 110
Unhappy explanations

This tool makes me unhappy in several ways

- I would need the links to the original websides of the different systems. (FBA, WHO, IPSSS, WPSS..) plus notice of the last actualization of the content. There are so many explanations/guides in the internet, some of them not recently updated and with divergent content in details.
Please could you send me the links, at least into this thread!?

- Its irritating for the patients - as you could read in other postings of this thread, that there are survival prognoses indicated.

Patients confound the meanings of "mean" and "median", and almost nobody knows what "median" means. There is no range indicated in these scores which would help understanding, that there is a certain variety in life expectations. Your life expectancy changes with treatments e.g. SZT. After that you have other life expectances than before. Patients seem to be much interested in the special individual chances they can get by a special treatment. Scoring the whole illness helps a little for some people (like me, additionally browsing studies), but perhaps not the MDS-Patients-public.

A little bit more of explanations for this would help some people not to panic.

- It is sometimes not clearly expressed if parameters like blast counts specialities of the bone marrow etc. have to exist cumulatively or alternatively to lead to the special desease category like "RAEB2 or RA.

If a doctor tells a patient today that he has RT or immune MDS, where can he find further informations? Not in the classifications.

- Networking, internetforums, self help groups for patients lead to a widespread sharing of experiences with diagnoses, treatments, coping with the illness for each patient. Participating for a longer time period in self-help-activities means to have a big knowledge also of different patients biographies that do not go together with official school medicine. There exists a wide source for informations especially today in the internet, often offering alternative treatment methods which are actually not fully explained by school medicine, but can lead to success-experiences.

Therefore i see a sort of gap between a lot patients and the success in trying approaches to them by patients education.

It`s a sort of mosaic-learning bottom-up in patients self help. These classifications are top-down and only a few patients will understand the full meaning. The big strength of self help consists in my opinion in challenging the prognoseses of school medicine in providing better perspectives as in the average treatment guidelines for practicioners/health providers described. And thats what is wonderful and exiting in patients self help. Never giving up, ongoing learning and sharing.

Kind regards,
Margarete, 54, living in Vienna, Austria,
MDS/AML M2, diagnosed 9/2007, then Chemos, aSZT 4/2008, chronic GVHD

Last edited by akita : Tue Dec 28, 2010 at 12:26 PM.
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