我的TSC家庭综合症——TSC患儿母亲的自述

• 作 者: 真诚
• 出 处: 健康大视野
• 发表日期: 2008年12期
• 关键词: TSC 结节性硬化症 我自己 可真 湘雅医院 人说 活着 康康 文化知识

你可曾自问:“是不是我带给我的小孩这个疾病?”从确诊为 TSC 后,患者虽然害怕,但还是不得不面对 TSC,每个患者家庭所承受的精神压力及情绪变化,都是无法回避的现实问题。当患者家属学会去面对,并开始接受这种病状事实时,或许,有些父母可以迅速接受;或许,有些父母需要更久的时间来接受这种事实。当被告知这种病症无法治愈时,对于患者家属的打击是更为严重的。特别是当母亲看到自己的孩子痛苦,却只能袖手旁观时,那种心痛只有自己默默承受。

Have you ever asked yourself, “Is this a disease that I bring to my child?” Although the patient was afraid of being diagnosed with TSC, he still had to face the TSC, the stress and emotional changes in each patient’s family , Are unavoidable real problems. Perhaps some parents may accept promptly when the patient’s family members learn to face and begin to accept the facts of the condition; perhaps, some parents need more time to accept this fact. When told that this condition can not be cured, the family members of the attack is even more serious. Especially when the mother saw his child’s pain, but can only stand by, the kind of heartache only silently bear.