日本の大学病院, 希少疾患, 治療しない, Japanese University hospitals, rare diseases, no will to treat

To the CFS fellows.

This "CFS fuss" is the problem of the CFS community.

Everything about the CFS was written on this website.

The administrator of the Co-Cure-Japan will not be able to correspond to the CFS community anymore

due to the severe health condition and very difficult life of my own

(cardiac problem, generalized edma (unkonwn origin) besides the symptoms origned by the diseases themselves)

-- the life with the rare diseases in Japan has been under the UNBELIEVABLY and EXTREMELY difficult

situation because of the poor skilled practitioners

at the university hospitals, comparing to the ones in West.

(The doctors at the Japanese university hospitals have not known about the "practising",

how to treat patients: What they know is only "gathering the data" and "categorization".)

The attitude of the Japanese university hospitals for the patients with the rare diseases

has been VERY famous among the rare disease communities in the world.

(having patients hospitalized as long as possible, just for watching, without any will to treat)

---just only for their papers--

Administrator, Co-Cure-Japan, Rika Kageyama

CFS since 1979 (15 years old), diagnosed in 1989 (U of W)

Relapsing Polycnondritis since 1995, diagnosed in 2005

Intestinal Behcet's since 2001, diagnosed in 2011

and others (ongoing)

....please excuse any typo and grammar mistakes due to the annnoying edema....