Definition of Nanbyo  (Intractable Diseases)

The Japanese word nanbyo refers to a disease that is not medically or clearly defined. The expression is commonly used in Japanese societies to refer to so-called “intractable diseases.” Therefore, the diagnosis of an intractable disease may depend on the level of healthcare and the social state of affairs of a country at that time.

Infectious diseases such as dysentery, cholera and tuberculosis were categorized as intractable diseases at a time when the Japanese people lacked sufficient health care. Without effective treatment available, these diseases cost the lives of a great number of people. In that regard, they were undoubtedly intractable diseases. Japanese society has since become much more developed, and in addition to the advancements of public hygiene and medicine, health care and medical care have drastically improved to the point that all of the above mentioned infectious diseases can now be treated, and are no longer considered intractable.

Nevertheless, some diseases remain difficult to treat and easily become chronic, and these are the kind of diseases that are now referred to as intractable. 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 patient’s care, causing a heavy burden on other family members of the patient, both financially and mentally.

 

Definition of Tokutei Shikkan 

       (Specified Rare and Intractable Diseases)

The Japanese phrase tokutei shikkan literally means “specified diseases.” This refers to the type of rare, intractable disease that has resulted from an unidentifiable cause and is very difficult to treat without an established treatment procedure. This type of intractable disease develops chronically and may have serious consequences that make it very difficult or even impossible for patients to return to school or work. Treatment of these designated diseases is very expensive, carrying a high cost of long-term care and medicine, which causes great financial and mental stress on the patient’s family. Due to the lack of information and statistics about the cases of these rare and intractable diseases, a nationwide study on has been needed.

Currently, tokutei shikkan is classified into 130 different designated diseases. The treatment of 56 of these diseases is subsidized from public expense.

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<List of itractable Disease>

 

  1. Behcet disease

  2. multiple sclerosis

  3. myasthenia gravis

  4. systemic lupus erythematosus (SLE)

  5. subacute myelo-optico-neuropathy (SMON)

  6. aplastic anemia

  7. sarcoidosis

  8. amyotrophic lateral sclerosis (ALS)

  9. scleroderma , dermatomyositis, or polymyositis

  10. idiopathic thrombocytopenic purpura

  11. (1) polyarteritis nodosa

  12. (2) microscopic polyangiitis

  13. ulcerative colitis

  14. Takayasu arteritis

  15. thromboangitis obliterans, Buerger disease

  16. pemphigus

  17. spinocerebellar degeneration

  18. Crohn disease

  19. fulminant hepatitis

  20. malignant rheumatoid arthritis (rheumatoid vasculitis)

  21. Parkinson disease and related diseases

  22.  -progressive supranuclear palsy

  23.  -corticobasal degeneration

  24.  -Parkinson disease

  25. amyloidosis

  26. ossification of posterior longitudinal ligament (OPLL)

  27. Huntington disease

  28. moyamoya disease

  29. Wegener granulomatosis

  30. dilated cardiomyopathy, congestive cardiomyopathy

  31. multiple system atrophy

  32.  -striatonigral degeneration (SND)

  33.  -olivopontocerebellar atrophy (OPCA)

  34.  -Shy-Drager syndrome

  35. epidermolysis bullosa

  36. pustular psoriasis

  37. disseminated spinal canal stenosis

  38. primary biliary cirrhosis

  39. severe acute pancreatitis

  40. idiopathic necrosis of the femoral head

  41. mixed connective-tissue disease

  42. primary immunodeficiency syndrome

  43. idiopathic interstitial pneumonia

  44. retinitis pigmentosa

  45. prion diseases

  46.  -Creutzfeldt-Jakob disease (CJD)

  47.  -Gerstmann-Straussler-Sheinker syndrome

  48.  -fatal familial insomnia

  49. primary pulmonary hypertension

  50. neurofibromatosis type 1, neurofibromatosis type 2

  51. subacute sclerosing panencephalitis (SSPE)

  52. Budd-Chiari syndrome

  53. idiopathic chronic pulmonary thromboembolism with pulmonary hypertension

  54. lysosomal storage diseases

  55.  -Fabry disease

  56.  -other lysosomal storage diseases

  57. adrenoleukodystrophy (ALD)

  58. Familial Hypercholesterolemia ( Homozygous type)

  59. spinal muscular atrophy (SMA)

  60. spinal and bulbar muscular atrophy (SBMA)

  61. Chronic Inflammatory Demyelinating Polyneuropathy

  62. Hypertrophic cardiomyopathy

  63. Restrictive cardiomyopathy

  64. Mitochondrial disease

  65. lymphangioleiomyomatosis

  66. Severe erythema multiforme (Acute Phase)

  67. Ossification of the ligamentum flavum

  68. Diencephalo-hypophysial dysfunction

  69.  -Syndrome of abnormal secretion of prolactin

  70.  -Syndrome of abnormal secretion of gonadotropin

  71.  -Syndrome of abnormal secretion of antidiuretic hormone

  72.  -Syndrome of abnormal secretion of Thyroid stimulating hormone

  73.  -Cushing disease

  74.  -Acromegaly

  75.  -Hypopituitarism

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Overseas kidney trasnplant

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