蔡磊发文称已五体瘫软无法言语：不会屈辱等死

今日快讯 2025年09月30日 08:19 1 admin

近日，渐冻症患者、京东前副总裁蔡磊的妻子段睿透露其近况，称蔡磊已经完全没有语言能力了，胳膊、脚、脖子都无法活动，目前仅能吃一点流食。“如果他走了，我会真的很孤独。”

Cai Lei, former vice-president of JD.com and a prominent advocate for amyotrophic lateral sclerosis (ALS) research, has lost all ability to speak or move his limbs, according to a recent update from his wife, Duan Rui. She expressed concerns about loneliness if his condition worsens.

9月25日晚，蔡磊在社媒发文：看到了大家很关切我的现状，确实现在五体瘫软无法言语，压痛、口水、呛咳、吞咽、憋气每天都在折磨，但我还有眼睛和耳朵，请大家放心，我每天依然在带领团队，科研、运营、合作、人事、财务等等大量工作我每天依然通过眼控在高效处理。

In a social media post on Thursday, Cai confirmed his physical decline, noting that paralysis, pain, and difficulty swallowing challenge him daily. However, he emphasized that he remains actively engaged in leading his team via an eye-tracking device, managing research, operations, and collaborations.

蔡磊表示：“宁可与渐冻症战死，也不会面对绝症屈辱等死。”

他还透露，近期刚宣布了过去20个月对外科研资助超过5000万，这背后是上百个科研项目的合作。“奇迹已经发生，一个个之前必然死亡的病友现在活过来，奇迹必将还继续发生，这是一个AI和生命科学即将点燃的时代！”

"I would rather fight ALS to the death than await death in humiliation," Cai stated. He recently announced over 50 million yuan ($7 million) in research funding distributed in the past 20 months, supporting more than 100 projects. Cai expressed optimism about scientific progress, citing cases of ALS patients who have survived against the odds. "Miracles are happening… this is an era where AI and life sciences will ignite change," he said.

另据红星新闻，蔡磊助理陈女士对记者表示，蔡磊目前的情况是段老师描述的那样，已经持续好几个月的时间了，目前身体状况还算稳定。蔡磊目前依靠用眼控仪打字实现日常交流，“打字挺快的，一分钟几十个字。”

陈女士称，蔡磊虽然工作强度没以前高，需要工作一两个小时休息一下，因为眼睛打字太累，腰部也不能久坐，但思维一样敏捷。他经常线上参加科研会议，每天除了休息就是正常工作。

Cai's assistant, Chen, verified that his condition has been stable for months. Though he requires breaks due to fatigue, his cognitive clarity remains undiminished. Using eye-tracking technology, Cai communicates efficiently, typing dozens of words per minute.

此前报道

蔡磊出生于1978年5月，曾担任京东集团副总裁。2019年，他不幸确诊渐冻症，然而这种罕见病目前无药可医。

Diagnosed with ALS in 2019, Cai has since founded a patient data platform, a genetic database, and philanthropic initiatives, investing tens of millions of yuan into rare disease research.

确诊渐冻症后，决不放弃的蔡磊搭建起“渐愈互助之家”患者医疗大数据科研平台，至今已链接上万名患者。在他的努力下，中国第一个渐冻症病理科研基因样本库得以建立，这一成果为基因层面病因研究打开了新的大门。

他还创立了渐冻症公益基金和慈善信托，累计投入数千万元，特别设立了“生命科学破冰奖”及“破冰奖学金”。

此前5月18日，渐冻症“斗士”蔡磊获得了“全国自强模范”称号。

获表彰后，蔡磊用眼控仪写下感言：“获此荣誉，我非常激动，超过我过去所有的荣誉。这是对我的鼓励，更是对和我一样千千万万的渐冻症罕见病群体的关怀。坚持努力，决不放弃，面对艰难，开创美好！”