A research group led by Lecturer Takehisa Hirayama and Professor Osamu Kano of Toho University School of Medicine revealed through a questionnaire survey of patient groups that amyotrophic lateral sclerosis (ALS) patients are inadequately prepared for disasters.
According to Toho University, the research group includes, in addition to Toho University, Aichi Medical University, Tokushima University, Tokyo Metropolitan Institute of Medical Science, Tokyo Metropolitan Neurological Hospital, Kyoto University iPS Cell Research Institute, Shiga University of Medical Science, Nagoya University, Tohoku University, Researchers and medical personnel from Sendai Nishitaga Hospital are also participating.
In 2022, a research group conducted a questionnaire survey of 60 ALS patients and 55 of their caregivers nationwide, and found that 89% of ALS patients were on ventilators, but 86% of respondents "We are not prepared for disasters," he answered.Additionally, 12% of respondents had no alternative means of communication if their phone became unavailable.Less than 30% have staff to transport them, and 25% do not have food or drinks available.In the event of a power outage, 70% of people on ventilators could lose power for up to 24 hours.
ALS is an incurable disease in which the muscles needed to move the body gradually weaken, making it impossible to move as desired.The research group calls for a coordinated response, saying that cooperation from local governments and academia is essential in order to raise disaster prevention awareness among ALS patients and make adequate preparations.
Paper information:[Journal of Clinical Neuroscience] The necessity to improve disaster preparedness among patients with amyotrophic lateral sclerosis and their families
