Muscular Dystrophy

last update:20160113

This page includes who's who, achievements, sites and newspaper articles concerning muscular dystrophy.
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■Table of Contents
◇Chronology: The History of Muscular Dystrophy Wards in Japan
◇WHO
◇Academic Achievements
◇Theme Related Links
◇Newspaper Articles

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■Chronology: The History of Muscular Dystrophy Wards in Japan

◇1960 For the first time in Japan long-term hospitalization of children with muscular dystrophy begins at Nishitaga National Sanatorium.
◇1964　The National Association for Parents of Children with Progressive Muscular Atrophy is established (Tokyo, Japan Center for Cities).
The Nationwide Association for Children (Persons) with Severe Physical and Intellectual Disabilities is established.
・The Ministry of Health and Welfare releases an “Overview of measures addressing children with progressive muscular atrophy,” and, in order to move forward with research on the causes and treatment of this illness, primary muscular dystrophy healthcare institutions are designated and 20 special beds at both Nishitaga National Sanatorium and National Sanatorium Shimoshizu Hospital are created. (Since children with muscular dystrophy died around 14 to 15 years old in those days the Ministry of Health and Welfare was not able to grasp its actual number. After being flooded with parents hoping to have their children admitted to these special wards the Ministry of Health and Welfare established 9 facilities in 9 prefectures).
◇1964 National Sanatoriums begin to admit children with muscular dystrophy--100 beds
・The Health and Welfare Ministry releases its “Overview of measures addressing children with progressive muscular atrophy”
(1) Select patients to be institutionalized, establish a treatment program, ensure access to education
(2) Promote active rehabilitation services
(3) Promote research/collaborate with universities
(4) Medical fees are 80% of the amount of what is imposed as medical service under health insurance and medical treatment and education will be examined
◇1965 Second national convention. The “National Association for Parents of Children with Muscular Atrophy” renames itself the “Japan Muscular Dystrophy Association”.
・Vice Minister of Health and Welfare’s “Regarding the medical treatment and education of children with progressive muscular atrophy” report.
◇1965 The Child Welfare Act’s child-rearing and medical care system is applied but is limited to the National Sanatoriums.
◇1965-66 Education within institutions spreads.
◇1966 A school attendance survey is conducted (67.1% excused from attending school, 15.1% attending schools for children with disabilities)
・The Central Child Welfare Committee reports its recommendations
(1) Clarify treatment of children with progressive muscular atrophy under the Child Welfare Act
(2) Increase the number of beds for children with progressive muscular atrophy
(3) Look for methods of treating or preventing progressive muscular atrophy
◇1967 The number of beds in National Sanatoriums grows to 580.
・Vice Minister of Health and Welfare's report "Regarding the implementation of legislation to reform parts of the Child Welfare Act"
(1) Regarding the delegation of medical treatment and other tasks to National Sanatoriums
(2) Regarding children with progressive muscular atrophy, treatment as children with physical disabilities in line with the manner of their disability
(3) Limit physical disabilities that can be assigned to National Sanatoriums to progressive muscular atrophy
(4) Regarding extending the period of stay, etc.
◇1968 First muscular dystrophy ward is completed (Nishitaga National Sanatorium).
◇1969 Measures are taken to have people with physical disabilities caused by progressive muscular atrophy admitted to National Sanatoriums.
◇1971 Social welfare organizations for people with physical disabilities caused by progressive muscular atrophy begin having patients admitted to medical institutions
・The "Association for the aid of patients with progressive muscular atrophy" is founded. It gathers signatures in support of the establishment of a national muscular dystrophy research laboratory.
◇Early 1970s Motorized wheel chairs begin to be introduced. For a while the costs born by patients are very high.
◇1975 Occupational therapy wards are set up.
◇1976 Daycare wards are set up (support for patients living at home).
◇1978 National Neurology Center is established at Musashi National Sanatorium.
◇1980 "Wards to deal with patients becoming adults" are established as a means of addressing aging.
◇1982 A ward for adults with muscular dystrophy is established at Akita National Michikawa Sanatorium.
◇1986 The restructuring of national hospitals and sanatoriums is announced.
◇1990 Social insurance becomes applicable to mechanical ventilation treatment at home, programs to loan mechanical ventilators to patients living at home are initiated.
◇1991 (Amagasaki) Masato Tamaki, a patient with muscular dystrophy, sues to have his rejection from public high school reversed. On March 13th, 1992 the Kobe District Court rules that his rejection was illegal. (During the trial the school argued that its decision was based "not only on academic ability but on overall ability" while Tamaki asserted that academic ability must be the standard used to determine admittance. His suit was based on the fact that he was rejected despite scoring "in the top 10% of applicants" on the admissions test. Prior to this 1992 ruling, many students could only attend normal schools if they met certain conditions such as having a parent accompany them at all times, and as a result many had no choice but to attend schools for people with disabilities.)
◇1991-92 Funds are allocated for 2,500 muscular dystrophy beds.
◇1991 Computer communication programs initiated.
◇1992 The Japan Muscular Dystrophy Association initiates "Yume no tobira"[Dream doorway], a nationwide welfare network.
◇1993 Enactment of the "Act concerning the Promotion of the Research and Development and the Dissemination of Social Welfare Equipment."
◇2003 Enactment of the "Support Expense System Act"
・Enactment of "Standards regarding personnel, equipment, and administration of designated in-home support providers in accordance with the Physically Disabled Persons Welfare Act."
・Enactment of "Standards for equipment and administration of designated rehabilitation facilities for people with physical disabilities"
◇2004 National hospitals/sanatoriums across the country became independent national hospital organizations.
◇2005 With the exception of ALS patients, removal of phlegm with suction recognized for patients under care/people with disabilities living at home (Health Policy Publication No.0324006.)
◇2006 Support for the Independence of Persons with Disabilities Act - Muscular dystrophy wards go from being facilities governed by the Medical Care Act to being facilities designated as providers of medical and nursing care under the Support for the Independence of Persons with Disabilities Act. There is a transition from "[government] measures" to "contracts."

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■WHO

◆ITO Kayoko

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■Academic Achievements

By Our Members
◆ITO Kayoko March 31, 2010 "Muscular Dystrophy Wards: Issues Related to Long-term Care Facilities in Japan," Core Ethics6: 25-36 [PDF]/[Abstract in English]

◆OYAMA Ryoko, ITO Kayoko, KAWAHARA Hitoshi, TAKASAKA Shizuko, HAYASHI Noriko & TANAKA Tamaki September 26, 2009 "Examination of the Way of Support of Relocation of Severely Disabled People under Long-term Care: Focusing on Patients with Muscular Dystrophy" (Abstract in Japanese) The 6th Annual Convention of Japan Society of Disability Studies, Ritsumeikan University

◆ITO Kayoko September 25, 2009 "Policy Treatment and Unprofitable Treatment: What we can See from the Muscular Dystrophy Wards" Welfare Labor Quarterly 124: 153-162
http://www.gendaishokan.co.jp/new02.htm (Japanese)

◆ITO Kayoko August 28, 2009 "Cooperation of Medical Treatment and Welfare for Severely Disabled Patients with Medical Care: A Case Study of Patients with Muscular Dystrophy Transferring from Hospital to the Local Community," The 14th Annual Convention of Japan Intractable Illness Nursing Society, Presentation with Peer Review

◆ITO Kayoko June 25, 2009 "Facing Many 'First-time Experience': Discharge of Patients with Muscular Dystrophy with the Long-Term Recuperation and Start of their Living in a Community" Welfare Labor Quarterly: 123
http://www.gendaishokan.co.jp/goods/ISBN978-4-7684-2323-3.htm (Japanese)

◆ITO Kayoko June 6, 2009 "Supporting Discharge of the Patients with Severe Disabilities with Long-term Recuperation: A Case Study of Patient with Muscular Dystrophy," The 7th Annual Convention of Japan Welfare Sociology Association, Nihon Fukushi University (With Peer Review)

◆ITO Kayoko August 2008 Presentation "Securing Care and Living for Singles with Disabilities: A Case of Muscular Dystrophy Patient Leaving Hospital to Local Community after Long-term Recuperation" The 13rd Annual Convention of Japan Intractable Illness Nursing Society

◆ITO Kayoko February 2008 "Chapter 4 Independence of Patients: A Case of Muscular Dystrophy Patient" Medical World 2007 49-62 The 190th Reports of Graduate School of Humanity, Chiba University

◆ITO Kayoko September 16, 2007 Poster Presentation "Toward the 'Escaping Terminalization' of Muscular Dystrophy: Comparing Life of Muscular Dystrophy Patients in the National Hospital Wards and Independent Living", The 4th Annual Convention of Japan Society of Disability Studies

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■Theme Related Links

◆Muscular Disease Center (National Center Hospital)
http://www.ncnp.go.jp/hospital/english/muscular_disease_center.html
◆Muscular Dystrophies (Healthline)
http://www.healthline.com/health/muscular-dystrophy#Overview1
◆Muscular dystrophy (Better Health Channel)
https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/muscular-dystrophy
◆Muscular dystrophy (Centers for Disease Control and Prevention)
http://www.cdc.gov/ncbddd/musculardystrophy/
◆Muscular dystrophy (Mayo Clinic)
http://www.mayoclinic.org/diseases-conditions/muscular-dystrophy/basics/definition/con-20021240
◆Muscular dystrophy (NHS, U.K.)
http://www.nhs.uk/conditions/Muscular-dystrophy/Pages/Introduction.aspx
◆Muscular dystrophy (NIH, U.S.)
http://www.ninds.nih.gov/disorders/md/md.htm
◆Muscular dystrophy (TeensHealth)
http://kidshealth.org/teen/diseases_conditions/bones/muscular_dystrophy.html
◆Muscular dystrophy (Wikipedia)
https://en.wikipedia.org/wiki/Muscular_dystrophy
◆Muscular Dystrophy Association
http://www.mda.org/
◆Muscular Dystrophy Australia
http://www.mda.org.au/default.php
◆Muscular Dystrophy Canada
http://www.muscle.ca/
◆Muscular Dystrophy UK
http://www.musculardystrophyuk.org/
◆The Japan Muscular Dystrophy Association
http://www.jmda.or.jp/index_e.html
◆Understanding Muscular Dystrophy -- the Basics (WebMD)
http://www.webmd.com/children/understanding-muscular-dystrophy-basics

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UP:January 7, 2016 REV:January 12, 2016/January 13, 2016

The orginal Japanese page is prepared by Kayoko Ito

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