What happened to the patients who went first.那些先来的人,后来怎么样了。
Every card below is summarised from a story the Lecheng International Medical Tourism Pilot Zone Administration published itself — the government body that runs the zone. We did not write these, we do not pay for them, and each one links back to the original. All 39 stories in the archive are here, with photos and a plain-English summary — you do not need to leave this site to read them.下面每一张卡片,都摘自海南博鳌乐城国际医疗旅游先行区管理局自己发布的患者故事——那是管理这个园区的政府机构。不是我们写的,不是付费内容,每一条都附原文链接。档案里的 39 篇这里全部收录,配官方照片和中英摘要——不用跳去别的网站就能读完。
On 22 October 2026, a 73-year-old patient became the first person in China to receive the new subcutaneous auto-injector formulation of lecanemab, at Ruijin Hospital Hainan in Lecheng. The formulation — approved by China's NMPA — offers a portable, flexible option for Alzheimer's patients, and Lecheng's 'first access' policy made it available here before it was broadly available elsewhere in the country.2026年10月22日，73岁的葛女士在乐城瑞金海南医院完成仑卡奈单抗皮下自动注射剂型首次给药，成为国内首位接受该剂型治疗的患者。该剂型已获 NMPA 批准，为需要便携、灵活用药方案的患者提供了新选择，乐城“先行先试”政策让它率先可及。
Condition病种
Alzheimer's disease阿尔茨海默病
Done治疗
Lecanemab, subcutaneous auto-injector — reached Lecheng before the rest of the mainland仑卡奈单抗皮下自动注射剂型——在乐城先行可用
Two fathers — one from Guangdong, one from Henan — arrived at Zhongshan Ophthalmic Center Hainan in Lecheng within a week of each other. Their sons share the same rare disease, LHON, which can strip a young person's vision in weeks. Both boys were treated with Raxone (idebenone 150mg), the world's first approved drug for LHON vision loss, which Lecheng's pilot policy brought to Chinese patients; 100+ patients have benefited so far.两位父亲——一位来自广东、一位来自河南——前后脚走进乐城的中山大学中山眼科中心海南国际眼科医院。他们的孩子患同一种罕见病 LHON，视力可能在几周内被夺走。两个孩子都用上了 Raxone（艾地苯醌150mg）——全球首个获批用于 LHON 视觉损害的药物，依托乐城先行政策，已惠及百余位患者。
Mustafa Atac spent decades on the other side of the consultation table: a Turkish GP trained at Ankara University Medical School, with neurosurgical training in the Netherlands and years of medical work in the United States. Severe stage-4 COPD left him in a wheelchair, unable to walk more than 20 metres. After standard treatment in London and Istanbul told him the damage was irreversible, he flew to Lecheng for treatment options he could not get at home.Mustafa Atac 曾站在诊桌的另一边：安卡拉大学医学院毕业的土耳其全科医生，在荷兰受过神经外科培训，也在美国从事过医疗工作。极重度慢阻肺（第4期）让他坐上轮椅，走20米就喘。在伦敦和伊斯坦布尔接受标准治疗、被告知损伤不可逆后，他飞到乐城，寻找本国给不了的治疗选择。
Condition病种
His own care自身就医
Done治疗
Chose Lecheng as a patient after decades of treating patients himself在行医数十年后,作为患者选择了乐城
Timothy Earl, a 52-year-old American jiu-jitsu coach who has lived in Haikou for 14 years, had been living with cataracts for two years. On 25 June 2026 he had a 10-minute procedure at Hainan (Boao) International Eye Hospital in Lecheng — and left the operating room smiling, flashing a victory sign and looking forward to his 'new eyes'.52岁的美国人 Timothy Earl 是一名巴西柔术教练，已在海口生活14年，被白内障困扰两年。2026年6月25日，他在乐城的海南（博鳌）国际眼视光眼科医院接受了约10分钟的手术，推出手术室时笑着比出胜利手势，说已经开始期待自己的“新眼睛”。
A chemistry teacher found a pale patch on her neck one month after her wedding; another patient had struggled with spreading white patches for years. Both found treatment aimed at repigmentation in Lecheng — and with it, the first hope in a long time that their skin could go back to normal.一位化学老师在婚后一个月发现后颈出现白斑；另一位患者与蔓延的白斑已共处多年。她们都在乐城找到了以“复色”为目标的治疗——以及久违的希望：皮肤有可能回到正常的样子。
Sergey, 34, a physics professor at a Russian university, had barely ever been to hospital before a swollen lymph node turned out to be small-cell carcinoma of the maxillary sinus. In May 2026 he boarded a plane to China for the first time in his life, to receive boron neutron capture therapy (BNCT) at the Pengbo Boron Neutron Hospital in Lecheng — one of the few facilities in the world offering it.34岁的谢尔盖是俄罗斯一所大学的物理学教授，患癌前“几乎没去过医院”。一次淋巴结肿大确诊为上颌窦小细胞癌。2026年5月，他人生第一次出国飞抵中国，前往乐城先行区的鹏博（海南）硼中子医院接受硼中子俘获治疗（BNCT）——全球拥有该设备的机构屈指可数。
Asher Hill, a figure-skating choreographer and CBC sports commentator from Toronto, had planned a beach holiday in Thailand after a long season. A friend’s recommendation sent him to Boao Lecheng instead, for a four-day stay that combined a full health check-up with physiotherapy and traditional Chinese medicine — including his first experience of horn cupping. He described the result with three words: hopeful, insightful, unexpected.来自多伦多的 Asher Hill 是花滑编舞师，也为加拿大广播公司（CBC）体育频道做解说。赛季结束后他本想飞泰国休假，听朋友推荐改道博鳌乐城，四天里做了全面体检、理疗和中医项目，还第一次体验了牛角拔罐。他用三个词总结这趟旅程:充满希望、富有洞见、出乎意料。
Condition病种
Burnout and a long-overdue check-up长期疲惫与久未体检
Done治疗
4-day health check and physiotherapy stay at Boao Yiling博鳌一龄 4 天体检与理疗
BOBOKOV ATANAS STOILOV, a 67-year-old Bulgarian entrepreneur, learned about Lecheng online as one of China's best-known medical-travel destinations. On a business trip to China in April 2026 he made a detour to Hainan, where Boao Yiling Life Care Center designed a personalised anti-aging and medical-cosmetology program for him — including treatments he says are not available in his own country.67岁的保加利亚企业家 BOBOKOV ATANAS STOILOV 在网上了解到乐城是中国知名的医疗旅游目的地。2026年4月的商务之行中，他专程到海南，博鳌一龄生命养护中心为他定制了个性化医美抗衰方案——其中有些项目他说在国内（保加利亚）是没有的体验。
Condition病种
A health problem left unanswered in his own country在本国始终没有答案的健康问题
A 60-year-old woman had taken ursodeoxycholic acid for more than two years for primary biliary cholangitis, but her liver enzymes stayed high and scans began to show cirrhosis, an enlarged spleen and a little fluid. Roughly 30–40% of PBC patients do not respond to the standard drug. In February 2026 she travelled to Ruijin Hospital Hainan, where Prof. Xie Qing wrote the zone’s first prescription for seladelpar — a PPARδ agonist approved elsewhere but not yet available in mainland China outside Lecheng’s pilot channel.60 岁的李女士患原发性胆汁性胆管炎，规律服用熊去氧胆酸两年多，碱性磷酸酶始终降不下来，复查还出现了肝硬化、脾大和少量腹水。约 30%–40% 的 PBC 患者对一线药物无效，她就是其中之一。2026 年 2 月，她到乐城瑞金海南医院，谢青教授为她开出了乐城首张 Seladelpar 处方——这款 PPARδ 激动剂在境外已获批，国内尚未上市，只能通过乐城先行先试通道使用。
Condition病种
Primary biliary cholangitis (PBC)原发性胆汁性胆管炎（PBC）
Done治疗
Seladelpar, a PPARδ agonist not yet marketed in ChinaSeladelpar（PPARδ 激动剂，国内尚未上市）
After five years of hospitals and dead ends, a Chinese-Australian patient with NUT cancer — a rare and aggressive tumour — flew nine hours to Boao International Hospital's International NUT Cancer Diagnosis and Treatment Center in Lecheng in January 2026, one of the few centers in the world dedicated to this disease.一位澳大利亚华人 NUT 癌患者， rare 且侵袭性极强，求医五年屡屡碰壁。2026年1月底，她飞行9小时抵达乐城先行区博鳌国际医院的国际 NUT 癌诊断与治疗中心——全球少有的专攻这种疾病的中心。
Condition病种
NUT carcinoma — rare and aggressiveNUT 癌——罕见且侵袭性强
Done治疗
Twelve hours from Australia to Lecheng从澳洲到乐城,12 小时
On 17 January 2026, six patients with Leber hereditary optic neuropathy (LHON) — teenagers, young graduates, family breadwinners — received idebenone (150mg) on the same day at Ruijin Hospital Hainan in Lecheng, becoming China's first patients treated with the drug. It had been approved for the Lecheng pilot zone less than a month earlier.2026年1月17日，六位莱伯遗传性视神经病变（LHON）患者——有十几岁的少年、刚毕业的年轻人、上有老下有小的中年人——同一天在乐城瑞金海南医院完成艾地苯醌（150mg）治疗，成为中国首批用上该创新药的患者。此时距该药在乐城获批还不到一个月。
An 84-year-old woman from Inner Mongolia suffered from a pancreatic malignancy with digestive-tract obstruction and obstructive jaundice. At Ruijin Hospital Hainan in Lecheng, surgeons performed a high-difficulty total pancreas combined multi-organ resection. She was discharged on 22 December 2025, telling the ward round: 'Coming here for treatment was my wisest choice.'来自内蒙古的84岁孙奶奶因胰腺恶性肿瘤、消化道梗阻、梗阻性黄疸备受折磨。瑞金海南医院为她实施了高难度的全胰腺联合多脏器切除手术。2025年12月22日出院当天她说：“来这治病，是我最明智的选择。”
Qiqi, 7, from Shandong, was diagnosed with bilateral sensorineural deafness; conventional hearing aids helped little. In October 2025, at Boao Super Hospital in Lecheng, a team led by Prof. Li Yongxin of Beijing Tongren Hospital performed a robot-assisted cochlear implant using the OTOARM & OTODRIVE intelligent system — products introduced under Lecheng's special licensing policy, not yet available elsewhere in China.山东德州7岁的琪琪确诊双耳感音神经性耳聋，传统助听器效果有限。2025年10月，北京同仁医院李永新教授联合博鳌超级医院耳鼻喉科团队，为她实施了机器人辅助人工耳蜗植入手术，核心是 OTOARM & OTODRIVE 智能机械植入系统——依托乐城特许政策率先引进的产品。
Condition病种
Hearing loss听力障碍
Done治疗
A hearing solution customised under Lecheng's special-access policy在乐城特许政策下定制的听力方案
A 61-year-old man from Qionghai had a benign thyroid nodule that grew from 2cm to 4.6cm over a few months. At Ruijin Hospital Hainan he had ultrasound-guided cyst sclerotherapy — a needle-based procedure instead of open surgery — which took about ten minutes. His son’s summary: they were back home in Jiaji the same day, with a Shanghai specialist doing the work an hour’s drive from their door.家住琼海嘉积的 61 岁路先生，两年前发现甲状腺结节，复诊时已从 2cm 长到 4.6cm。他在乐城瑞金海南医院接受了超声引导下的囊肿硬化治疗——不用开刀，整个过程约 10 分钟。他儿子说，做完就立马回嘉积了，很方便:上海瑞金的专家在“家门口”就把问题解决了。
Condition病种
Benign thyroid nodule that grew from 2cm to 4.6cm甲状腺良性结节，由 2cm 长到 4.6cm
Done治疗
Ultrasound-guided cyst sclerotherapy, about 10 minutes超声引导下囊肿硬化治疗，约 10 分钟
Sisi, 11, could tell the season had changed by her nose: blocked, sneezing, running, itchy enough that she rubbed the skin raw, and nights that left her exhausted at school. Her family moved to Hainan for her allergies, and it was allergen immunotherapy — treatment aimed at the cause rather than the symptom — at Lecheng that began to change the pattern. Around 30–40% of the world’s population lives with an allergic disease; desensitisation is the one approach that can alter its course.11 岁的思思对季节变化的感知比日历还准:一换季就鼻塞、打喷嚏、流鼻涕，鼻子痒到揉破皮，晚上睡不好，第二天上课打不起精神。一家人为此从吉林迁到海南，真正带来转机的是在乐城开始的脱敏治疗——针对病因、而不是只压症状。全球约 30%–40% 的人受过敏性疾病困扰，脱敏治疗是目前唯一能改变疾病进程的方法。
Condition病种
Allergic rhinitis since early childhood自幼年起长期过敏性鼻炎
Done治疗
Allergen immunotherapy (desensitisation) in Lecheng在乐城接受过敏原脱敏治疗
Mr. Cai had chest discomfort; a Holter monitor was due to reveal dangerous signals. When Dr. Liu Wei called to tell him, the phone answered: 'the number you dialed does not exist.' The Ruijin Hainan team refused to let go and tracked him down in time — the rescue ended with his safe discharge on 4 July 2025.蔡先生因胸口不适就诊，动态心电图正要揭示危险信号。刘伟医生打电话通知他时，听筒里却是“您所拨打的号码是空号”。瑞金海南医院团队没有放弃，及时把他找了回来。这场始于空号电话的生命救援，以2025年7月4日康复出院画上句号。
Mark Batka, 46, a figure-skating coach from Lunenburg, Canada, had lived with a lipoma on his chest and back for ten years. When it reached about 3cm, bending hurt and he wanted it out — but at home the procedure was not covered by insurance and the queue was long. On his first trip to China he joined a medical-travel group to Hainan and had it removed at Ruijin Hospital Hainan in June. Leaving the ward, he thanked the surgeon in Chinese.46 岁的 Mark Batka 是加拿大卢嫩堡的花滑教练，胸背部的脂肪瘤跟了他十年。长到约 3 公分后，弯腰会疼，他想切掉，但在当地这项手术不在医保内、费用高、排队久。第一次来中国，他随医疗旅游团飞到海南，6 月在乐城瑞金海南医院完成切除。出院时他特地用中文对主刀医生说了声“谢谢”。
Condition病种
Lipoma on chest and back, growing for ten years胸背部脂肪瘤，病史 10 年
A 69-year-old woman from north-east China had a cystic lesion in the head of her pancreas that was growing on follow-up scans. Local surgeons proposed removing the pancreatic head, duodenum, gallbladder, bile duct and part of the stomach. She happened to be spending the winter in Hainan, and went to Ruijin Hospital Hainan instead, where the team operated while preserving her pancreas. Her words to the surgeon afterwards: “I am 69 and I have never met a doctor like you.”69 岁的郭女士体检发现胰头囊性结节，复查显示有增大迹象，当地建议切除胰头、十二指肠、胆囊、胆总管和部分胃。她正好要到海南过冬，便转到乐城瑞金海南医院，团队在切除病变的同时保住了她的胰腺。出院时她握着主刀医生金佳斌的手说:“我活了 69 岁，从没见过像你这样的好医生。”
Condition病种
Growing cystic lesion in the head of the pancreas胰头囊性结节增大，存在恶变风险
Done治疗
Pancreas-preserving surgery at Ruijin Hainan瑞金海南医院保胰手术
Short bowel syndrome patients can absorb almost nothing without lifelong IV nutrition. The innovative drug teduglutide entered China through Lecheng's 'first-track' channel — its first mainland patient was a toddler, and by spring 2025 the path that started in Lecheng had reached 25 families. The drug has now been formally approved for the whole country.短肠综合征患者没有静脉营养几乎无法吸收。创新药替度格鲁肽经乐城“先行先试”通道进入中国——中国大陆首位治疗者是1岁多的患儿；到2025年春，这条从乐城出发的路已惠及25个家庭。如今该药已正式获批上市。
A 67-year-old woman had a liver tumour of roughly nine centimetres — and a family afraid to hope. Instead of open surgery, she received yttrium-90 (Y-90) radioembolization in Lecheng. Three months later, scans showed the tumour had shrunk by about 70% and was expected to keep shrinking.67岁的李女士肝脏里有一个约9公分的肿瘤，全家不敢抱希望。她没有开刀，而是在乐城接受了钇90（Y-90）放射栓塞治疗。三个月后复查，肿瘤缩小约70%，并有望持续缩小。
A 106-year-old woman had been unable to eat, pass stool or gas for a week, and by the time she reached hospital she was vomiting repeatedly. Conservative enema treatment at another hospital had not worked. At Ruijin Hospital Hainan, the deputy director assembled anaesthesia, cardiology, respiratory, radiology, blood bank, theatre and nursing into a team for her, confirmed the obstruction and operated. She went home on 8 April.106 岁的王奶奶腹胀腹痛一周，吃不下、排不出，直到剧烈呕吐才被家人送到医院，外院按肠梗阻做了灌肠保守治疗，效果不好。转到乐城瑞金海南医院后，院方当天集结麻醉、心内、呼吸、放射、输血、手术室和护理团队组成“期颐护卫队”，明确诊断并完成手术。4 月 8 日，她出院回家。
Condition病种
Bowel obstruction肠梗阻
Done治疗
Emergency surgery by a multidisciplinary team at Ruijin Hainan瑞金海南医院多学科团队急诊手术
Alexander, a Greek engineer who worked in Silicon Valley and married into a Chinese family, settled in Haikou. In August 2024 a seizure that lasted twenty or thirty seconds — long enough to see his wife and daughter panic while he lost control of his body — led to a diagnosis of glioma, a tumour whose five-year mortality in China is exceeded only by pancreatic and lung cancer. At West China Lecheng Hospital he was put on an international innovative drug that had not yet reached patients elsewhere in the country.亚历山大是希腊籍硅谷工程师，也是中国女婿，和妻女定居海口。2024 年 8 月，他在家中突发癫痫，持续二三十秒，能看见妻女慌张却完全失去对身体的控制，随后确诊脑胶质瘤——这种“大脑杀手”在中国的 5 年病死率仅次于胰腺癌和肺癌。在乐城的华西乐城医院，他用上了一款国际创新药。
Condition病种
Glioma — diagnosed after a seizure脑胶质瘤——癫痫发作后确诊
Done治疗
International innovative drug at West China Lecheng Hospital华西乐城医院使用国际创新药
Yaya, 8, from Qujing in Yunnan, was diagnosed with neuroblastoma at two. Her childhood since then has consisted of two things: treatment, and the road to treatment. Lecheng was the family’s last stop; after discharge she returned to the ordinary life of a schoolchild, and her family sent a hand-written letter of thanks 1,240 kilometres to the zone’s administration. Neuroblastoma is called the king of childhood cancers for its incidence, speed and mortality.云南曲靖 8 岁的丫丫，2 岁确诊神经母细胞瘤，此后四年，童年几乎只剩两件事:治病，和在治病的路上。乐城是她求医的最后一站，出院后她过上了和普通孩子一样的生活，一家人把一封感谢信寄了 1240 多公里，送到乐城先行区管理局。信里写:“要好好学习，好好活着。”
Condition病种
Neuroblastoma, diagnosed at age 2神经母细胞瘤，2 岁确诊
Done治疗
Treatment at Lecheng after four years of searching辗转四年后在乐城治疗
Xiaoxiao, 7, from Hunan, has active Crohn’s disease — she knows it as “ulcers in my tummy”. In the active phase almost everything she used to enjoy is off the table: eating the wrong thing brings severe pain, diarrhoea, sometimes blood. Only reaching remission gives her ordinary food back. A special medical-purpose formula newly licensed into Lecheng gave the family a route towards that remission.来自湖南的 7 岁女孩笑笑是一名处于活动期的克罗恩病患者，她只知道“肚子里长溃疡了”。活动期必须严格忌口，吃错东西就会剧烈腹痛、腹泻甚至便血，正常吃饭成了奢望。只有进入缓解期，这个愿望才有可能实现。近日一款特殊医学用途配方食品落地乐城，为笑笑带来一条通往缓解期的路。
Condition病种
Crohn’s disease, active phase克罗恩病活动期
Done治疗
Special medical-purpose food introduced through Lecheng经乐城引进的特殊医学用途配方食品
Ruxolitinib cream reached Lecheng in August 2023 under the zone’s early-access policy and quickly became one of its most sought-after products. A year on, more than 5,000 patients had been treated. The article follows three of them — including a man from Chongqing who had lived with vitiligo since middle school, twenty years in all — through clinics that fill up whenever Prof. Zhang Xuejun of Boao Super Hospital’s dermatology centre is in town.2023 年 8 月，白癜风创新药芦可替尼乳膏依托先行先试政策落地乐城，很快成为“爆款”。落地一年多，已有超过 5000 名患者因此受益。文章跟访了其中三位——包括一位初中起病、患病 20 年、专程从重庆飞来的患者——博鳌超级医院皮肤医学中心张学军教授每次坐诊，候诊队伍都排成长龙。
Condition病种
Vitiligo白癜风
Done治疗
Ruxolitinib cream, one year after it reached Lecheng芦可替尼乳膏落地乐城一年
Ms Liu, who exercises regularly, had a right shoulder that had felt “not quite right” for years. A fall while exercising made it worse; massage and painkillers treated the symptom, not the tear, and the ache began to cost her sleep. At Ruijin Hospital Hainan’s orthopaedics department she became the hospital’s first patient to undergo arthroscopic rotator cuff repair — keyhole surgery through the shoulder joint rather than an open repair.平素喜欢运动的刘女士，右肩“不得劲”了好几年。一个月前运动时扭伤，肩痛加重，中医按摩、口服药物都只能缓解症状，后来连睡觉都成了问题。在乐城瑞金海南医院骨科，她接受了院内首例肩关节镜下肩袖修补术——通过几个小孔完成修补，而不是切开肩膀。
Condition病种
Rotator cuff tear after a shoulder injury肩部扭伤后肩袖撕裂
Done治疗
First shoulder arthroscopic rotator cuff repair at Ruijin Hainan瑞金海南医院首例肩关节镜下肩袖修补术
Boao Yiran ENT Hospital performed its first cochlear implant, a milestone that widens the number of places in the zone where deaf patients can be treated. The patient was Tiantian, 7, who flew in with her grandparents from another province, weighing the things every medical-travelling family weighs: whether the child would be comfortable and well fed before and after surgery, and whether the surgical team had done enough of these operations.博鳌怡然耳鼻喉医院完成院内首例人工耳蜗植入手术，这意味着乐城能开展这类手术的医院又多了一家。患者是 7 岁的甜甜，由爷爷奶奶带着跨省飞来，一家人反复权衡的正是异地就医最现实的问题:孩子术前术后能不能休息好、吃得好，手术团队的经验够不够。
Condition病种
Severe hearing loss重度听力损失
Done治疗
First cochlear implant at Boao Yiran ENT Hospital博鳌怡然耳鼻喉医院首例人工耳蜗植入
Wang Yang, 54, a professional manager in Huaiyang, Hunan, had lived with obstructive hypertrophic cardiomyopathy for a decade — a thickening of the heart muscle that narrows the outflow tract and brings breathlessness, chest pain and fainting. Half a year before this article he had resigned because of his health. With no breakthrough drug at home, he went to Lecheng; afterwards he was back in the office, briefing his chairman, walking fast and speaking faster.54 岁的王旸是湖南怀化一家民企的职业经理人，患肥厚型梗阻性心肌病十年——心肌异常增厚挤压流出道，带来呼吸困难、胸痛和晕厥。半年多前，他因身体原因不得不递交辞呈。在针对性药物长期没有突破的情况下，他去了乐城；如今他又回到办公室向董事长汇报项目，走路带风、语速极快。
For two years the parents of a boy called Gungun travelled the country looking for a way to obtain olipudase alfa, an enzyme replacement therapy for acid sphingomyelinase deficiency — a disease so rare that fewer than 120 patients have been diagnosed in the United States. Because ASMD needs lifelong treatment, flying abroad every few weeks was not a plan. The manufacturer had no near-term plan to enter China, so Lecheng’s special-access channel became the family’s route.两年来，滚滚的父母跑遍全国，只为找到一款名为奥立扑酶α（Olipudase alfa）的药——它用于治疗酸性鞘磷脂酶缺乏症（ASMD），一种在美国确诊患者不足 120 例的极罕见病。因为需要终身用药，每隔几周飞国外并不现实；药企短期内也没有进入中国的计划。最终，乐城的特许通道成了这个家庭的出路。
Jiajia was diagnosed with myasthenia gravis in 2007, while still in high school. Drooping arms, weak legs, choking on her own saliva, and a tiredness other people read as laziness became ordinary. By the time her son was 22 months old she had no photograph with him, because she could not smile — the muscles moved without control and a smile came out looking like crying. Generalised MG joined China’s first rare-disease list in 2018; at Lecheng she found treatment that let her begin to take her life back.佳佳 2007 年还在读高中时确诊重症肌无力。手臂下垂、腿脚无力、咽口水会被呛到，那种无力感常被旁人误解成“懒”。儿子出生 22 个月，她竟没有一张和孩子的合照——因为她笑不出来，一张嘴肌肉就不受控，笑比哭还难看。2018 年全身型重症肌无力被纳入中国首批罕见病目录；在乐城，她找到了让生活重新开始的治疗。
Condition病种
Generalised myasthenia gravis全身型重症肌无力
Done治疗
Treatment at Lecheng for a disease diagnosed in 2007在乐城治疗 2007 年确诊的疾病
Wu, 64, from Shanxi, has fought allergies for forty years. In his younger years he simply took more pills when one stopped working — first sneezing and itchy eyes, later allergic rhinitis and asthma. His test results showed three allergens at grade 5, the top of the scale. At Boao Super Hospital he was started on a licensed sublingual spray for desensitisation, the kind of treatment that aims at immune tolerance rather than symptom relief.来自山西的 64 岁武大哥和过敏抗争了 40 年。年轻时一种药不管用就多吃几种，症状从打喷嚏、眼睛痒，慢慢发展成过敏性鼻炎和哮喘。检测报告显示三种过敏原都是最高的 5 级。在博鳌超级医院，他开始使用经特许引进的舌下喷雾脱敏药物欧脱克——这类治疗追求的是免疫耐受，而不只是压住症状。
Condition病种
Allergic rhinitis with three grade-5 allergens过敏性鼻炎，三种过敏原均为 5 级
Done治疗
Sublingual spray desensitisation licensed into Lecheng特许舌下喷雾脱敏药物（欧脱克）
Twenty-seven children with achondroplasia — the most common form of dwarfism — came to Ruijin Hospital Hainan for a patient-education day and, in the same visit, their next course of vosoritide, a licensed medicine that targets the underlying cause of the condition rather than only its complications. One family reported that their son had grown 4.4cm in half a year and was doing better overall.27 位先天性软骨发育不全患儿来到乐城瑞金海南医院参加患教活动，顺便“续药”——他们使用的是特许新药伏索利肽。这种病是最常见的侏儒症类型，而这款药针对的是病因本身，不只是处理并发症。一位家长说，半年时间孩子长高了 4.4 厘米，状态也更好了。
Condition病种
Achondroplasia先天性软骨发育不全
Done治疗
Vosoritide, a licensed new drug at Ruijin Hainan瑞金海南医院使用特许新药伏索利肽
Xiaohan had eczema from the age of three; by five the rhinitis had arrived, with a mouth that fell open in sleep, snoring and poor rest. His father worked in allergy care and knew exactly what was coming — the allergic march from skin to airway — but desensitisation was not available to a child that young. Years later, at Lecheng, he finally started it.小涵 3 岁起就患湿疹，父母把注意事项背得滚瓜烂熟，湿疹还是反复发作。5 岁时鼻炎出现:睡觉张嘴、打呼、睡不好。他父亲从事过敏相关工作，很清楚过敏会随年龄“进梯”——从皮肤走到气道——但孩子年龄不够，做不了脱敏。几年后，他终于在乐城开始了脱敏治疗。
Condition病种
Eczema from age three, then allergic rhinitis3 岁起湿疹，后发展为过敏性鼻炎
Zhu Xue’er, 31, has had epilepsy for nearly twenty years. Her most regular habit is medication: four anti-epileptic drugs at 9am and 6.30pm, plus an antidepressant she has taken since repeated seizures six years ago brought on depression. About ten million people in China live with epilepsy, and more than half have comorbidities — anxiety and depression most often. The article follows her attempt to leave the maze, and the Lecheng care that treats the seizures and the mind together.31 岁的朱雪儿患病近 20 年，生活里最规律的事是吃药:每天上午 9 点和晚上 6 点半，4 种抗癫痫药加 1 种抗抑郁药。中国约有 1000 万癫痫患者，一半以上伴有共病，焦虑和抑郁最常见。这篇报道跟着她走出“神经迷宫”，也记录了乐城把癫痫与心理问题放在一起处理的思路。
Condition病种
Epilepsy with comorbid depression癫痫合并抑郁
Done治疗
Treatment at Lecheng addressing seizures and comorbidities在乐城同时处理癫痫与共病
Zhang Wei found a white patch on his face in February 2018; the doctor said it was nothing to worry about, and within months the patch had spread across half his face. Five years of treatments followed, with little change, and he stopped going out and stopped seeing people. He was close to giving up when a drug introduced through Lecheng gave him something he had run out of: hope.2018 年 2 月，张伟发现脸上有一块白斑，医生说无大碍，几个月后小白斑连成片，扩到半张脸，确诊白癜风。此后五年，他试遍各种方法，病情没有明显改善，不愿出门、不愿社交。就在他想放弃治疗时，乐城引进的一款新药让他重新燃起希望。
Condition病种
Vitiligo spreading across half the face白癜风，白斑扩展至半张脸
A four-year-old boy from Lanzhou was born with short bowel syndrome: after major resection his intestine can no longer absorb enough to sustain growth, and at home the only option was lifelong intravenous nutrition. China had no approved drug. The product was shown at the China International Import Expo, and six months later — through Lecheng’s pilot channel — he became one of the patients using it. The article traces how the expo, the zone and the hospitals shortened that distance.家住兰州的果果出生不久就患上短肠综合征:小肠被大量切除后，肠道吸收面积不足，无法维持营养和生长，只能长期依赖肠外营养和静脉输注。国内长期处于“国际有药、国内无药”的困境。这款孤儿药在进博会上首次展出，6 个月后经乐城先行通道落地，果果用上了它。文章讲的就是这条从展台到病床的路是怎么被缩短的。
Condition病种
Short bowel syndrome短肠综合征
Done治疗
Orphan drug via Lecheng, six months after its first CIIE exhibit孤儿药经乐城落地，距进博首展仅 6 个月
Xiao Chen was born in 2011 with bilateral microtia and closed ear canals, and with them severe hearing loss. His parents were warned to watch his speech, because a child who cannot hear may never learn to talk. Years of hospital visits followed, and the hearing he eventually regained in Lecheng came from rebuilding the pathway for sound rather than only fitting a device on the outside.2011 年，小陈出生时就是双侧先天性外中耳畸形、耳道闭塞，伴有严重听力损失。医生提醒父母要特别关注语言发育——听不到，很可能也说不出来。此后是一路寻医，最终在博鳌乐城，他靠“从内到外”重建听力的方案，重新听见了这个世界。
Condition病种
Bilateral microtia with closed ear canals双侧先天性外中耳畸形、耳道闭塞
Ms Xiao, a Shanghai healthcare worker in her early thirties, discovered adrenocortical carcinoma during a routine company check-up — a cancer with an incidence of 0.5–2 per million that progresses fast and metastasises early. After surgery and radiotherapy, her doctors pointed her to Ruijin Hospital Hainan, where mitotane, approved abroad but not then available on the mainland, could be prescribed. She became the hospital’s first patient on the drug, and used the zone’s policy allowing patients to take medication home.在上海一家医疗机构工作的“90 后”肖女士，单位体检时发现肾上腺皮质癌——这种病发病率约百万分之零点五到二，恶性程度高、进展快、易局部转移。手术和放疗后，医生建议她到乐城瑞金海南医院，那里可以开到境外已上市、当时国内还没有的米托坦。她成为该院全国首例用药患者，也用上了“带药离园”的政策。
Condition病种
Adrenocortical carcinoma肾上腺皮质癌
Done治疗
Mitotane, first use in China, at Ruijin Hainan瑞金海南医院全国首例使用米托坦
Dai Lina, 33, lost her hearing as an adult and had to leave the nursing career she loved. Last year she received one of the latest cochlear implants at Evergrande International Hospital in Lecheng. After switch-on came the slow work of adapting — and then, on 22 March, a video on Douyin: her first day back at work. The small sounds most people never notice, a cat, footsteps, rain, are new to her.33 岁的代丽娜因成人语后聋离开了她热爱的护理专业，只能赋闲在家。去年，她在乐城恒大国际医院植入了最新款人工耳蜗。开机之后是漫长的适应，直到 3 月 22 日，她在抖音发了一条自己第一天上班的视频:“耳蜗戴上后我上班了，这是我以前不敢想的事情！”猫叫、脚步声、雨声——这些我们从不留意的细小声音，对她都是全新的。
Condition病种
Adult post-lingual deafness成人语后聋
Done治疗
Latest cochlear implant at Evergrande International Hospital恒大国际医院植入最新款人工耳蜗
These are individual cases chosen by the hospitals and the authority to be published. They are not a clinical study and they are not a promise about your outcome. Read them for the pattern — how fast things move, which hospitals handle what, what patients from your part of the world did — then ask us the hard questions.这些是医院和管理局挑选后公开发布的个案,不是临床研究,也不构成对你治疗结果的承诺。看它们是为了看规律——流程有多快、哪家医院擅长什么、和你来自同一地区的患者是怎么做的——然后来问我们最难的问题。
What we add我们补什么
The archive tells you the outcome. It does not tell you the cost, the visa, the airport, the interpreter, or who answers the phone at 2am. That is the part we handle.档案告诉你结果,但不会告诉你费用、签证、机场、翻译,以及凌晨两点谁接电话。那部分是我们做的。
Go to the source去看原文
All 39 stories, in Chinese, on the authority's site.全部 39 篇原文,中文,在管理局官网。
Send the file. We will tell you which hospital, which doctor, and what it costs — including when the answer is “not here”.把资料发来。我们会告诉你该去哪家医院、找哪位医生、大概多少钱——也包括答案是「这儿不合适」的时候。
🇨🇳China中国
Official官方
