若年スモン患者の生活と課題に関するアンケート調査

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  • Questionnaire Survey on the Life and Challenges of Young SMON Patients

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説明

This study aims to clarify the past difficulties and challenges in life among young SMON patients and consider the future support of young SMON patients.The survey results indicated that many patients experienced a sense of despair about the future at the time of the onset of the disease. On the other hand, it was found that parents and siblings served as great supports during their struggles against the disease. It was also found that the life after the onset was greatly affected in terms of academics and employment due to the physical symptoms caused by SMON. In addition, prejudice and lack of understanding about SMON existed, resulting in patients being unable to receive necessary services and suffering as they had to live hiding about SMON. In addition to the current permanent measures that have been implemented for SMON patients, it is necessary to make recommendations to the government and conduct initiatives to prevent the issue from becoming forgotten so that young SMON patients do not encounter disadvantages in the future.

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