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Work and Proposals Related to Support Activities Conducted by the Japan Muscular Dystrophy Association Following the Great East Japan Earthquake

Kenji Yazawa
Vice President, Japan Muscular Dystrophy Association

1. Opinion based on overall damage caused by the Great East Japan Earthquake

At 2:46 p.m. on March 11, 2011, a 9.0 magnitude earthquake hit 130 km east-northeast off the Sanriku coast of East Japan at a depth of about 24 km. Thus, most of the areas in the three Tohoku prefectures experienced outages of power and TV and phone service, making it impossible to ascertain what had occurred until power was restored to the area. It was impossible, therefore, to confirm the safety of association members in the area.

Evacuation information related to the tsunami caused by the earthquake was sent by disaster prevention radio and one-seg TV broadcasts, and people started to evacuate. However, the information did not reach a sufficiently large number of people as the precise size of the tsunami was not broadcast until later, which resulted in the death of many people.

The tsunami damaged the emergency cooling equipment at Tokyo Electric Power Company's Fukushima Daiichi Nuclear Power Plant, which caused a meltdown, and this had a major impact on the dissemination of emergency evacuation information and subsequent reconstruction. On account of power shortages, there were planned power outages on March 14 in the area that Tokyo Electric Power Company supplies power to, and this also had an impact on areas outside the disaster area in East Japan. In particular, patients using ventilators and hospitals were faced with a difficult situation.

2. Efforts and response by the association

After the earthquake on March 11, the association received nine emails regarding the safety of members registered for the Yume-no-tobira (internet communication service for the association members) mailing list, and there were reports from Fukushima on conditions from members who had evacuated without returning home. By March 13, thirty such messages were received. After that, there were around ten postings related to the earthquake each day.

A mailing list was created on March 13 to share information among all association branch office managers. As for collecting information on the earthquake, information was shared by uploading it to the Yume-no-tobira blog.

On March 17, The Great East Japan Earthquake Emergency Response Headquarters was established with President Hisanobu Kaiya serving as headquarters director. Tohoku Regional Division Manager Takao Sato was asked to serve as the local response headquarters director, and on March 22, the Great East Japan Earthquake Emergency Relief Fundraising Drive was launched. On April 16, ANA flights to Sendai were relaunched, and President Kaiya visited the area with supplies and checked on conditions.

As of May 16, the association had collected 2,642,609 yen in donations, and at the May 22 general meeting, the money was presented to Vice President Takao Sato, local response headquarters director.

The Higashi Nihon Daishinsai Kinkyu Hokoku (Great East Japan Emergency Report) was given at the Spring National Member Training Session held on May 21 (Saturday).∗1

  • There was a patient with muscular dystrophy who was living independently with the support of the Fukushima branch office, and the earthquake hit right when his helper was not there. His relatives and helper tried to save him, but they were not in time. After saying “let's give up,” he was washed away by the tsunami with his grandmother who he was living with.
  • As for conditions at the Iwate branch office after the earthquake, the tsunami quickly hit, washed away houses, and caused fires, and this resulted in the death of three family members of patients. One member whose house was washed away by the tsunami escaped to high ground with the assistance of a staff member of the welfare workshop he worked in.
  • A member of the Miyagi branch office who uses a ventilator twenty-four hours a day was at the community life activity center Rarugo, one kilometer from the Natori-shi coast, when the earthquake hit. Violent shaking with a seismic intensity of 6+ on the Japanese scale continued for about five minutes, and after the shaking subsided, a worker watched the one-seg TV broadcast on his mobile phone and found out a seven-meter tsunami was expected to hit the Port of Sendai. Therefore, people started to evacuate only fifteen minutes after the shaking subsided but fled a mere two kilometers from the facility. It was learned that a ten-meter tsunami had hit the Port of Sendai, and people evacuated an additional three kilometers inland to a community center that ultimately was flooded to the height of three meters. People barely escaped with their lives. After the member returned home, there were power outages so he had to use his ventilator for four days by exchanging internal batteries, two converters, and external batteries. The member used the converter by attaching it to the car cigarette lighter. While using the equipment, the converter started making a strange sound and could not be used anymore. Using a manual resuscitator (Ambu bag), he went to his aunt's house, which had electricity, and spent two days there.
  • Nishitaga Hospital (Taihaku-ku, Sendai-shi) 160 beds for muscular dystrophy patients, 80 beds for seriously ill children, and 240 general patient beds

Message from the Dr. Masaru Yoshioka of Nishitaga Hospital


When the earthquake hit, we were truly lucky that no patients or employees were injured, the earthquake caused no problems with ventilators, and there was no major damage to the building. Although there were power outages immediately after the earthquake, the hospital quickly switched over to its own power generator, but there was only enough heavy-oil fuel to last until today, March 14, which was a point of concern. Luckily, power was restored last night, and it has been possible to send emails to parties outside the hospital starting today. Although we could not confirm the safety of all our outpatients who live at home, we have not received any reports of injuries, etc. We accepted several people who use ventilators at home as emergency patients.

We were able to completely avoid problems with ventilators despite the disaster, and I would like to express my appreciation since we were able to raise safety awareness of our staff through respiratory risk management under the guidance of the Jinno Group Subcommittee, including Dr. Sato and Dr. Tatara.∗3


3. Issues that came to light since directly after the disaster

The following is an excerpt from the Higashi Nihon Daishinsai Kinkyu Hokoku given by Tohoku Regional Division Manager Takao Sato at the training session held on May 21 (Saturday):

The Great East Japan Earthquake, including the subsequent tsunami and nuclear accident, made people think of the impermanence of life.

The association must always use its knowledge related to preventing and mitigating disasters in order to protect the lives of patients and their families and to not again loose the precious lives as we did this time.

The following is from Saigaiji Yoengosha Shien Manyuaru (Manual for Supporting People Requiring Aid During a Disaster) issued by the Volunteer Center of the Tohoku Fukushi University.∗2

It is best to make the following preparations:

  • (a) make your house safe.
  • (b) ensure that you can evacuate and survive after a disaster.
  • (c) hold a household disaster prevention meeting.
  • (d) develop relationships with neighbors so that you can help each other.

It is also important that individuals make preparations for the following cases:

  • (a) it is difficult to get around
  • (b) there is a decline or suspension in services such as welfare and medical/health ones

Another major issue is being able to overcome changes in the environment, which can also be called emergencies. It is important that people who require assistance during emergencies speak up for themselves.

  • (a) If it is envisioned that the impact of the disaster will last for an extended time
  • ∗ Various proposals are necessary, including dispatching helpers to provide care and making temporary housing barrier free.
  • (b) Telling people where you are makes it possible to prevent disasters and protect oneself
  • ∗ It is impossible to ascertain information on conditions after a disaster for persons with disabilities who are living at home, and not staying at emergency shelters.
  • ∗ It is important to communicate information on where one is during daily life and to overcome disasters with one's own ability to protect oneself while receiving the cooperation of local residents.

The patients who are association members and their family members always are aware of the importance and impermanence of life. The fact that Mr. Sato of Iwaki-shi, Fukushima, said, “let's give up now,” right before dying in the earthquake was probably because he was always aware of his life.

4. Proposals regarding the future

It has been one and a half years since the Great East Japan Earthquake, and we would like to make the following proposals so that the many difficulties people faced and their experiences are put to good use.

  • (a) People should acquire the ability to survive disasters by communicating with others during daily life and receiving the cooperation of local residents in order to create a local network that will be the greatest support during a disaster.
  • (b) Community welfare services should be reinforced so that they strengthen people's ability to survive disasters.
  • (c) During daily life, people should develop a greater interest in disaster prevention and mitigation and actively take part in activities such as disaster training through various entities including family, local community, workplace, and organizations. (Managing a national list of organization members will make it possible for the headquarters and branch offices to provide support if a whole region is impacted by the disasters.)
  • (d) People should become used to obtaining information during their daily life so that they can also do so during emergencies (portable radio, mobile phone one-seg broadcasts, e-mail and mailing lists, Twitter, and Facebook).
  • (e) Disaster prevention radio should be improved (broadcast with small-scale FM stations and make it possible to obtain clear information using various devices such as portable radios.)
  • (f) Power sources for ventilators and other equipment should be secured (improvement regarding batteries, converters, power generators, emergency power generators at hospitals).

 

Reference material

  • ∗1 2011 Spring National Member Training Session “Higashi Nihon Daishinsai Kinkyu Hokoku”, ZSZ Ryoikyu (2011),
    Japan Muscular Dystrophy Association, Zenkoku Shinshin-Shogaisha Fukushizaidan, March 18, 2011.
  • ∗2 Saigaiji Yoengosha Shien Manyuaru, Tohoku Fukushi University Volunteer Center, June 2006
  • ∗3 Shinkeikin Nanbyo Saigai Shien Gaidorain: Ministry of Health, Labour and Welfare Commissioned Neurological Disorder Research “Kinjisutorofi No Ryoyo To Jiritsu Shien No Shisutemu Kochiku Ni Kansuru Kenkyu” (Research on Constructing a System for Muscular Dystrophy Care and Independent Living Support), March 2007