FTLD as the specified rare and intractable disease

Abstract

  Some diseases remain difficult to treat and easily become chronic, and these are the kind of diseases that are now referred to as intractable (http://www.nanbyou.or.jp/entry/1360) . According to the definition set out in the Principles of policy for intractable diseases published in 1972, “nanbyo” refers to: (1) diseases that have resulted from an unidentifiable cause and, without a clearly established treatment, have a considerably high risk of disability, and (2) diseases that chronically develop and require a significant amount of labor for the patientʼs care, causing a heavy burden on other family members of the patient, both financially and mentally.
  With increasing the number of diseases and patients, the new low for caring intractable diseases was in force on January 1 in 2015. The treatment of 306 of these diseases is now subsidized from public expense. Behavioral variant frontotemporal dementia (bvFTD) and semantic dementia were included in these intractable diseases. Distinctive unusual behaviors and activity of a younger person are serious obstacles to managing and caring for patients with FTLD. The subsidies for medical care might be very helpful for young-onset patients and their carers. Due to the lack of information and statistics about the cases of these rare and intractable diseases, a nationwide study on has been needed.