Health Briefing健康简报
Last updated最近更新 · 2026-09-28 23:38 Asia/Shanghai

Individuals — genetic & immune stories人物 — 遗传与免疫故事

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Biographies (by person)人物简介(按人)

69
Singaporean新加坡

Sheikh HaikelSheikh Haikel(谢赫·海克尔)

Singaporean新加坡Genetic遗传Asia亚洲Self-affected本人患病Complex / polygenic复杂 / 多基因
colorectal_cancer

Public patient disclosure (entertainer)公开患者披露(艺人) · Singapore新加坡

Stage-4 colon cancer with liver metastases (diagnosed Sep 2025; public disclosure Sep 2026). Interview-reported blood tests said non-hereditary; not a published genetics study.四期结肠癌伴肝转移(2025年9月确诊;2026年9月公开)。访谈称血液检测提示非遗传性;非发表遗传学研究。

Genetic factor: 遗传因素:Genetic angle: hereditary vs sporadic colorectal cancer communication; claim of non-heritability is self/interview-reported.遗传角度:结直肠癌遗传性与散发性沟通;非遗传性为自述/访谈,非论文证据。

Uncertainty: 不确定性:Medical details from journalism interview, not a peer-reviewed case report.医学细节来自新闻访谈,非同行评议病例报告。

Institutions: 机构:NUS Medicine国大医学 · NUH国大医院

Source来源 ↗ · The Star (Straits Times/ANN)

Monogram avatar (no free portrait located).字母头像(未找到自由肖像)。

Chinese中国

Unnamed girl (Shanghai gene-editing trial)未具名女孩(上海基因编辑试验)

Chinese中国Genetic遗传Asia亚洲Trial participant试验参与者Unknown / not specified未知 / 未标明
crispr_trialgene_therapy

Pediatric trial participant (deceased)儿科试验参与者(已故) · Shanghai, China中国上海

Death in an experimental gene-editing trial linked to Shanghai Jiao Tong University / Xinhua Hospital researchers; university probe reported Jul 2026.与上海交大/新华医院相关研究者试验性基因编辑治疗中死亡;2026年7月报道高校调查。

Genetic factor: 遗传因素:Directly tied to experimental gene editing / gene therapy oversight debates (Order 818 context).直接关联试验性基因编辑/基因治疗监管讨论(818号令语境)。

Uncertainty: 不确定性:Identity withheld in public reporting; clinical protocol details remain incompletely disclosed in open sources cited here.公开报道未披露身份;此处引用的公开来源中试验方案细节仍不完整。

Institutions: 机构:SJTUSM交大医学院

Source来源 ↗ · CNN

Monogram avatar (no free portrait located).字母头像(未找到自由肖像)。

Chinese中国

Unnamed boy (HuidaGene trial)未具名男孩(辉大基因试验)

Chinese中国Genetic遗传Asia亚洲Trial participant试验参与者Unknown / not specified未知 / 未标明
gene_therapycrispr_trial

Pediatric trial participant (deceased)儿科试验参与者(已故) · China (city not firmly established in cited sources)中国(引用来源未明确城市)

Child death linked to a separate Chinese experimental gene therapy (HuidaGene); company announcement Aug 2026 per Nature/CNN coverage of two pediatric deaths.另一例中国试验性基因治疗相关儿童死亡(辉大基因);据Nature/CNN对两例儿科死亡的报道,公司于2026年8月公告。

Genetic factor: 遗传因素:Part of 2026 transparency debate on gene-editing/gene-therapy IITs in China.属2026年中国基因编辑/基因治疗研究者发起试验透明度讨论的一部分。

Uncertainty: 不确定性:Map pin is approximate (China centroid-ish); exact trial site city not confirmed in our curated summaries. Identity withheld.地图标记为近似位置;精选摘要未确认确切试验城市。身份未公开。

Source来源 ↗ · Nature / CNN

Monogram avatar (no free portrait located).字母头像(未找到自由肖像)。

He Jiankui
Chinese中国

He Jiankui贺建奎

Chinese中国Genetic遗传Immune免疫Asia亚洲Scientist / context科学家 / 语境Unknown / not specified未知 / 未标明
crispr_trialhiv_ccr5

Researcher (germline CRISPR scandal)研究者(生殖系CRISPR丑闻) · Shenzhen / southern China (work base at announcement)深圳/中国南方(宣布时工作基地)

Claimed CCR5-edited twin girls for HIV resistance (2018); globally condemned; later imprisoned; reshaped germline-editing governance.2018年宣称CCR5编辑双胞胎女婴以期抗HIV;全球谴责;其后获刑;重塑生殖系编辑治理。

Genetic factor: 遗传因素:Illegal/unethical human germline CRISPR; CCR5 immune-HIV angle.违法/不伦理人类生殖系CRISPR;CCR5与HIV免疫相关。

Immune factor: 免疫因素:Edit intended to alter HIV susceptibility via CCR5.编辑意图通过CCR5改变HIV易感性。

Uncertainty: 不确定性:Long-term health of the children is incompletely publicly documented; biographies beyond the scandal facts are not asserted here.儿童长期健康公开记录不完整;此处不扩展丑闻事实之外的传记。

Source来源 ↗ · Nature

Photo: The He Lab · CC BY 3.0 · Commons

Tu Youyou
Chinese中国

Tu Youyou屠呦呦

Chinese中国Asia亚洲Scientist / context科学家 / 语境Unknown / not specified未知 / 未标明
malaria_therapy

Scientist / Nobel laureate科学家 / 诺奖得主 · Beijing, China (China Academy of Chinese Medical Sciences)中国北京(中国中医科学院)

Not a patient case — discoverer of artemisinin (Project 523); 2015 Nobel in Physiology or Medicine for malaria therapy.非患者个案——青蒿素发现者(523任务);2015年诺贝尔生理学或医学奖(疟疾疗法)。

Immune factor: 免疫因素:Infectious-disease / antiparasitic landmark; immune system not the primary mechanism celebrated.传染病/抗寄生虫里程碑;获奖主线并非免疫系统。

Uncertainty: 不确定性:Listed as notable individual milestone from archive, not a genetic/immune patient case.作为档案中的重要人物里程碑列入,非遗传/免疫患者个案。

Institutions: 机构:CAMS / PUMC医科院/协和医学院

Source来源 ↗ · Nobel Prize

Photo: Bengt Nyman from Vaxholm, Sweden · CC BY 2.0 · Commons

Tasuku Honjo
Japanese日本

Tasuku Honjo本庶佑

Japanese日本Immune免疫Asia亚洲Scientist / context科学家 / 语境Unknown / not specified未知 / 未标明
immunotherapy_pd1

Scientist / Nobel laureate (PD-1)科学家 / 诺奖得主(PD-1) · Kyoto, Japan日本京都

Not a patient — co-discovered PD-1 pathway enabling checkpoint immunotherapy; 2018 Medicine Nobel with James Allison.非患者——PD-1通路共同发现者,奠基检查点免疫治疗;2018年与Allison共享医学诺奖。

Immune factor: 免疫因素:Foundational immune-checkpoint science later scaled in China domestic PD-1 antibodies (e.g. toripalimab).奠基性免疫检查点科学,其后在中国国产PD-1抗体(如特瑞普利单抗)中规模化。

Institutions: 机构:Kyoto U京大

Source来源 ↗ · Nobel Prize

Photo: 大臣官房人事課 · CC BY 4.0 · Commons

James Allison
American美国

James Allison詹姆斯·艾利森

American美国Immune免疫Scientist / context科学家 / 语境Unknown / not specified未知 / 未标明
immunotherapy_ctla4

Scientist / Nobel laureate (CTLA-4)科学家 / 诺奖得主(CTLA-4) · Houston, USA (MD Anderson affiliation commonly cited)美国休斯敦(常引用MD Anderson所属)

Not a patient — CTLA-4 checkpoint pioneer; 2018 Medicine Nobel with Honjo.非患者——CTLA-4检查点先驱;2018年与本庶佑共享医学诺奖。

Immune factor: 免疫因素:Opened modern cancer immunotherapy era referenced across our PD-1/CAR-T archive.开启现代癌症免疫治疗时代,贯穿本站PD-1/CAR-T档案。

Uncertainty: 不确定性:City pin is institutional affiliation approximate.城市标记为机构所属近似位置。

Institutions: 机构:MD Anderson安德森

Source来源 ↗ · Nobel Prize

Photo: Bengt Nyman from Vaxholm, Sweden · CC BY 2.0 · Commons

Shinya Yamanaka
Japanese日本

Shinya Yamanaka山中伸弥

Japanese日本Genetic遗传Asia亚洲Scientist / context科学家 / 语境Unknown / not specified未知 / 未标明
ipsc

Scientist / Nobel laureate (iPS cells)科学家 / 诺奖得主(iPS细胞) · Kyoto, Japan日本京都

Not a patient — induced pluripotent stem-cell reprogramming; Nobel 2012 with Gurdon.非患者——诱导多能干细胞重编程;2012年与Gurdon共享诺奖。

Genetic factor: 遗传因素:Genetic reprogramming foundation for regenerative medicine across Japan/China/Korea.遗传重编程奠基,支撑日/中/韩再生医学。

Institutions: 机构:Kyoto U京大

Source来源 ↗ · Nobel Prize

Photo: 日本学士院 · CC BY 4.0 · Commons

American美国

David Bennett大卫·贝内特

American美国Genetic遗传Immune免疫Trial participant试验参与者Unknown / not specified未知 / 未标明
xenotransplant

Living xenotransplant recipient (deceased)活体异种移植受者(已故) · Baltimore, Maryland, USA (University of Maryland Medical Center)美国马里兰州巴尔的摩(马里兰大学医学中心)

Received 10-gene-edited porcine heart (Jan 2022); survived ~60 days. Landmark living-human cardiac xenotransplant.接受十基因编辑猪心(2022年1月);存活约60天。活体人类心脏异种移植里程碑。

Genetic factor: 遗传因素:Gene-edited donor organ.基因编辑供体器官。

Immune factor: 免疫因素:Innate immunity, zoonosis, coagulation challenges — later echoed in China’s 2026 liver xeno work.固有免疫、人畜共患与凝血挑战——其后在中国2026肝异种移植工作中呼应。

Uncertainty: 不确定性:Full clinical course details beyond survival window summarized from public university/reporting sources in archive item.存活窗口之外的完整临床过程仅据档案条目中的大学/公开报道摘要。

Source来源 ↗ · University of Maryland Medical Center

Monogram avatar (no free portrait located).字母头像(未找到自由肖像)。

Chinese中国

Unnamed brain-deceased recipient (Xijing pig-liver xeno)未具名脑死亡受者(西京猪肝异种移植)

Chinese中国Genetic遗传Immune免疫Asia亚洲Trial participant试验参与者Unknown / not specified未知 / 未标明
xenotransplant

Brain-deceased research recipient脑死亡研究受者 · Xi’an, China (Xijing Hospital)中国西安(西京医院)

Orthotopic 6-gene-edited porcine liver xenotransplant; ~11 days graft function with albumin/bile; late innate-immunity/coagulopathy issues (Nature BME 2026).六基因编辑猪肝原位异种移植;约11天移植物产生白蛋白/胆汁;后期固有免疫/凝血问题(《Nature BME》2026)。

Genetic factor: 遗传因素:Donor genetic engineering (6 edits).供体基因工程(六处编辑)。

Immune factor: 免疫因素:Prominent innate immunity and IgM-complement; scant T/B infiltration.固有免疫与IgM补体显著;T/B浸润少。

Uncertainty: 不确定性:Recipient identity not public; research setting (brain-deceased) — not a living-patient biography.受者身份未公开;脑死亡研究场景——非活体患者传记。

Source来源 ↗ · Nature Biomedical Engineering

Monogram avatar (no free portrait located).字母头像(未找到自由肖像)。

Demis Hassabis (with Jumper & Baker)
British英国

Demis Hassabis (with Jumper & Baker)德米斯·哈萨比斯(与Jumper、Baker)

British英国Scientist / context科学家 / 语境Unknown / not specified未知 / 未标明
alphafold

Scientist / Nobel laureate (AlphaFold / protein design)科学家 / 诺奖得主(AlphaFold/蛋白质设计) · London, UK (DeepMind / Google DeepMind)英国伦敦(DeepMind)

Not a patient — 2024 Chemistry Nobel for computational protein structure/design tools now used in antibody and enzyme pipelines including Asia biotech.非患者——2024年化学诺奖表彰计算蛋白质结构/设计工具,已用于含亚洲生物技术在内的抗体与酶管线。

Genetic factor: 遗传因素:Indirect genetic-drug discovery impact via structure prediction (paired with AlphaFold3 archive item).通过结构预测间接影响遗传药物发现(与AlphaFold3档案条目配对)。

Immune factor: 免疫因素:Antibody engineering relevance.与抗体工程相关。

Uncertainty: 不确定性:Group award; pin uses Hassabis/DeepMind London as representative location.集体奖项;地图以哈萨比斯/DeepMind伦敦为代表位置。

Source来源 ↗ · Nobel Prize

Photo: Alain Herzog · CC BY-SA 4.0 · Commons

American美国

Victoria Gray维多利亚·格雷

American美国Genetic遗传Trial participant试验参与者Autosomal recessive (AR)常染色体隐性(AR)Expanded扩展
scdcrispr_trial

Public CRISPR SCD patient advocate (expanded context)公开CRISPR镰贫患者倡导者(扩展背景) · Mississippi, USA (commonly reported residence)美国密西西比州(常见报道居住地)

Widely reported as among the first patients treated with CRISPR-based therapy for sickle cell disease (CTX001 / Casgevy pathway). Not named in our curated Casgevy archive cards — included as well-known public case linked to those approvals.广泛报道为镰状细胞病CRISPR疗法(CTX001/Casgevy路径)最早患者之一。本站Casgevy档案卡片未点名——作为与获批相关的知名公开个案扩展列入。

Genetic factor: 遗传因素:Ex vivo CRISPR editing of patient hematopoietic stem cells (BCL11A enhancer) enabling fetal hemoglobin.体外CRISPR编辑患者造血干细胞(BCL11A增强子)以诱导胎儿血红蛋白。

Uncertainty: 不确定性:NOT named in recent.json/archive.json items; biography limited to widely reported public facts. Verify details against primary reporting if used clinically.未在recent.json/archive.json条目中具名;传记仅限广泛报道的公开事实。临床引用请核对一手报道。

Source来源 ↗ · Public reporting + Casgevy corpus links

Monogram avatar (no free portrait located).字母头像(未找到自由肖像)。

American美国

Emily Whitehead艾米丽·怀特黑德

American美国Genetic遗传Immune免疫Trial participant试验参与者Unknown / not specified未知 / 未标明Expanded扩展
cartall

Public first pediatric CAR-T success (expanded context)公开首例儿科CAR-T成功个案(扩展背景) · Pennsylvania, USA (CHOP / Penn trial context)美国宾夕法尼亚州(费城儿童医院/宾大试验语境)

Widely reported as the first pediatric patient successfully treated with CAR-T for relapsed ALL (tisagenlecleucel / Kymriah lineage). Not named in our CAR-T archive cards — linked as famous immune-cell therapy case.广泛报道为复发ALL经CAR-T成功治疗的首例儿科患者(tisagenlecleucel/Kymriah谱系)。本站CAR-T档案未点名——作为知名免疫细胞治疗个案关联列入。

Genetic factor: 遗传因素:Engineered T-cell receptor/genetic modification of autologous T cells.自体T细胞基因改造/工程化。

Immune factor: 免疫因素:Living immune-cell drug; cytokine-release risks historically discussed in public accounts.活体免疫细胞药物;公开叙述中常提及细胞因子释放风险。

Uncertainty: 不确定性:NOT named in corpus JSON; do not treat this card as a primary-source biography from our briefing items.未在语料JSON中具名;勿将本卡片视为本简报条目的一手传记。

Source来源 ↗ · Public reporting + CAR-T corpus links

Monogram avatar (no free portrait located).字母头像(未找到自由肖像)。

Jennifer Doudna (with Charpentier)
American美国

Jennifer Doudna (with Charpentier)珍妮弗·杜德纳(与Charpentier)

American美国Genetic遗传Scientist / context科学家 / 语境Unknown / not specified未知 / 未标明Expanded扩展
crispr_trial

Scientist / CRISPR pioneer (expanded context)科学家 / CRISPR先驱(扩展背景) · Berkeley, California, USA美国加利福尼亚州伯克利

Not a patient — co-inventor of CRISPR-Cas9 as a programmable gene-editing tool (Science 2012 lineage in archive). 2020 Chemistry Nobel with Emmanuelle Charpentier (Nobel itself not a separate archive card here).非患者——CRISPR-Cas9可编程基因编辑工具共同发明者(档案含2012年Science谱系)。2020年与Charpentier获化学诺奖(本站未单列该诺奖卡片)。

Genetic factor: 遗传因素:Toolkit that enabled China first-in-human CRISPR trials and later Casgevy/base-editing therapies in corpus.该工具催生档案中的中国首例人体CRISPR试验及其后Casgevy/碱基编辑疗法。

Uncertainty: 不确定性:Person not a category=individual card in index; included via CRISPR archive + widely known Nobel. Charpentier shares credit.非首页individual分类卡片;经CRISPR档案与广为人知诺奖扩展。Charpentier共享贡献。

Institutions: 机构:Broad布罗德

Source来源 ↗ · Science

Photo: Duncan.Hull · CC BY-SA 4.0 · Commons

Angelina Jolie
American美国

Angelina Jolie安吉丽娜·朱莉

American美国Genetic遗传Public figure公众人物Self-affected本人患病Autosomal dominant (AD)常染色体显性(AD)Expanded扩展
brca

Actor / public BRCA1 disclosure演员 / 公开BRCA1披露 · Los Angeles, USA (commonly associated)美国洛杉矶(常关联)

Carries a BRCA1 pathogenic variant; underwent risk-reducing bilateral mastectomy (2013) and later oophorectomy (NYT essays). Mother, grandmother, and aunt died of cancer — she framed decisions as family-risk genetics, catalyzing global BRCA counseling conversations.携带BRCA1致病性变异;据《纽约时报》公开文章,2013年接受预防性双侧乳腺切除,其后卵巢切除。母亲、祖母与姑母死于癌症——她将决策框定为家族风险遗传学,推动全球BRCA咨询讨论。

Genetic factor: 遗传因素:BRCA1 germline variant elevates lifetime breast/ovarian cancer risk; illustrates genetic counseling and risk-reducing surgery.BRCA1胚系变异显著升高乳腺/卵巢癌终身风险;体现遗传咨询与风险降低手术。

Uncertainty: 不确定性:Public essays are not a peer-reviewed case report; exact lab details beyond BRCA1 status are not asserted here.公开文章非同行评议病例报告;除BRCA1状态外的实验室细节此处不断言。

Source来源 ↗ · New York Times (public essay)

Photo: Foreign and Commonwealth Office · CC BY 2.0 · Commons

Chris Hemsworth
Australian澳大利亚

Chris Hemsworth克里斯·海姆斯沃思

Australian澳大利亚Genetic遗传Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
apoe_alzheimer

Actor / public APOE4 disclosure演员 / 公开APOE4披露 · Australia / Los Angeles (public work bases)澳大利亚 / 洛杉矶(公开工作基地)

Publicly discussed carrying two copies of APOE ε4 (APOE4/4) after a lifestyle/genetics documentary workup; APOE4 is a well-studied Alzheimer disease risk allele, not a deterministic diagnosis.在生活方式/遗传学纪录片相关检查后公开讨论携带两份APOE ε4(APOE4/4);APOE4是研究充分的阿尔茨海默病风险等位基因,并非确定性诊断。

Genetic factor: 遗传因素:APOE4 risk allele for late-onset Alzheimer disease; risk ≠ destiny; lifestyle and other factors matter.晚发型阿尔茨海默病APOE4风险等位基因;风险≠命运;生活方式等因素同样重要。

Uncertainty: 不确定性:Disclosure via entertainment/media context; not a clinical research publication about his personal health trajectory.披露来自娱乐/媒体语境;非关于其个人健康轨迹的临床研究论文。

Source来源 ↗ · National Geographic / Limitless coverage

Photo: Gage Skidmore · CC BY-SA 3.0 · Commons

Céline Dion
Canadian加拿大

Céline Dion席琳·迪翁

Canadian加拿大Immune免疫Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
sps

Singer / stiff-person syndrome disclosure歌手 / 僵人综合征披露 · Québec / Las Vegas (career bases)魁北克 / 拉斯维加斯(事业基地)

Diagnosed with stiff-person syndrome (SPS), a rare neurological disorder often autoimmune (anti-GAD antibodies in many cases). Led to postponed tours; she has spoken publicly about spasms and treatment journey.确诊僵人综合征(SPS),罕见神经系统疾病,多数病例具自身免疫特征(常可检出抗GAD抗体)。导致巡演推迟;她公开谈及痉挛与治疗历程。

Immune factor: 免疫因素:SPS is frequently autoimmune; exact antibody profile in her case not fully public.SPS常为自身免疫性;其个案确切抗体谱未完全公开。

Uncertainty: 不确定性:Public entertainment reporting; antibody subtype and full clinical course not independently verified here.公开娱乐报道;抗体亚型与完整病程此处未独立核实。

Source来源 ↗ · BBC / public statements

Photo: Anirudh Koul · CC BY 2.0 · Commons

Selena Gomez
American美国

Selena Gomez赛琳娜·戈麦斯

American美国Immune免疫Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
sle

Singer-actor / SLE (lupus) disclosure歌手演员 / 系统性红斑狼疮披露 · Los Angeles, USA美国洛杉矶

Publicly living with systemic lupus erythematosus (SLE); underwent kidney transplant (2017) related to lupus complications. Speaks about autoimmune disease awareness.公开患系统性红斑狼疮(SLE);2017年因狼疮相关并发症接受肾移植。倡导自身免疫病认知。

Genetic factor: 遗传因素:SLE has polygenic risk components, but her public narrative centers on clinical autoimmune disease rather than a single-gene diagnosis.SLE具有多基因风险成分,但其公开叙述以临床自身免疫病为主,而非单基因诊断。

Immune factor: 免疫因素:Classic systemic autoimmune disease with multi-organ involvement.典型系统性自身免疫病,可累及多器官。

Uncertainty: 不确定性:Biographical medical details from public interviews/reporting.医学传记细节来自公开访谈/报道。

Source来源 ↗ · Public disclosure + NHLBI lupus overview

Photo: Lunchbox LP, Culver City, California · CC BY 2.0 · Commons

Venus Williams
American美国

Venus Williams维纳斯·威廉姆斯

American美国Immune免疫Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
sjogren

Tennis champion / Sjögren’s disclosure网球冠军 / 干燥综合征披露 · Florida / USA tour circuit美国佛罗里达 / 巡回赛

Diagnosed with Sjögren’s syndrome (autoimmune exocrinopathy); publicly discussed fatigue and career impact while continuing elite tennis.确诊干燥综合征(自身免疫性外分泌腺病);公开讨论疲劳与生涯影响,同时继续高水平网球。

Immune factor: 免疫因素:Autoimmune attack on moisture-producing glands; systemic fatigue common.自身免疫攻击外分泌腺;系统性疲劳常见。

Uncertainty: 不确定性:Public sports-media disclosure; serology details not asserted.公开体育媒体披露;血清学细节不断言。

Source来源 ↗ · Public disclosure + NIAMS overview

Photo: Francisco Diez · CC BY 2.0 · Commons

Nick Jonas
American美国

Nick Jonas尼克·乔纳斯

American美国Genetic遗传Immune免疫Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
t1d

Singer-actor / type 1 diabetes advocate歌手演员 / 1型糖尿病倡导者 · Los Angeles / USA美国洛杉矶

Diagnosed with type 1 diabetes (T1D) as a teen; T1D is autoimmune destruction of pancreatic β-cells. Longstanding public advocacy (e.g. Beyond Type 1).青少年期确诊1型糖尿病(T1D);T1D为自身免疫破坏胰岛β细胞。长期公开倡导(如Beyond Type 1)。

Genetic factor: 遗传因素:T1D has strong HLA and polygenic risk; not a single-gene Mendelian disease in typical cases.T1D具有显著HLA与多基因风险;典型病例非单基因孟德尔病。

Immune factor: 免疫因素:Autoimmune β-cell destruction requiring lifelong insulin.自身免疫破坏β细胞,需终身胰岛素。

Uncertainty: 不确定性:Public advocacy biography; no private medical record claimed.公开倡导传记;不声称私密病历。

Source来源 ↗ · Beyond Type 1 / public advocacy

Photo: daniiiM1 from Brazil · CC BY 2.0 · Commons

Christina Applegate
American美国

Christina Applegate克里斯蒂娜·苹果盖特

American美国Genetic遗传Immune免疫Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
ms

Actor / multiple sclerosis disclosure演员 / 多发性硬化披露 · Los Angeles, USA美国洛杉矶

Diagnosed with multiple sclerosis (MS); publicly disclosed in 2021. MS is an immune-mediated demyelinating disease of the CNS with genetic susceptibility (e.g. HLA-DRB1) plus environmental factors.确诊多发性硬化(MS);2021年公开。MS为中枢神经系统免疫介导脱髓鞘病,有遗传易感(如HLA-DRB1)与环境因素。

Genetic factor: 遗传因素:Polygenic susceptibility; not a monogenic diagnosis in typical MS.多基因易感;典型MS非单基因诊断。

Immune factor: 免疫因素:Immune-mediated CNS demyelination.免疫介导的中枢脱髓鞘。

Uncertainty: 不确定性:Public celebrity disclosure; MS subtype/course details limited in open sources used here.公开名人披露;此处所用公开来源中MS亚型/病程细节有限。

Source来源 ↗ · Public disclosure + National MS Society context

Photo: Gage Skidmore · CC BY-SA 2.0 · Commons

Song Joong-ki
South Korean韩国

Song Joong-ki宋仲基

South Korean韩国Genetic遗传Immune免疫Asia亚洲Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
behcet

Korean actor / Behçet’s disease disclosure韩国演员 / 白塞病披露 · Seoul, South Korea韩国首尔

Publicly stated he was diagnosed with Behçet’s disease (a rare systemic vasculitis with autoimmune/autoinflammatory features, HLA-B51 association in many populations) during military service era reporting; managed while continuing acting career.公开称曾确诊白塞病(罕见系统性血管炎,具自身免疫/自身炎症特征,多种人群与HLA-B51相关);在演艺生涯中持续管理。

Genetic factor: 遗传因素:HLA-B51 is a known susceptibility marker for Behçet’s in East Asian and other populations; not deterministic alone.HLA-B51是东亚及其他人群白塞病已知易感标志;单独不具决定性。

Immune factor: 免疫因素:Systemic vasculitis straddling autoimmunity and autoinflammation.介于自身免疫与自身炎症之间的系统性血管炎。

Uncertainty: 不确定性:Korean/entertainment media disclosure; clinical severity and HLA typing for this individual are not publicly confirmed here.韩国/娱乐媒体披露;其个人临床严重度与HLA分型此处未公开确认。

Source来源 ↗ · Public Korean media disclosure + disease overview

Photo: LGEPR · CC BY-SA 2.0 · Commons

Satomi Ishihara
Japanese日本

Satomi Ishihara石原里美

Japanese日本Genetic遗传Immune免疫Asia亚洲Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
graves

Japanese actor / Graves’ disease disclosure日本演员 / 格雷夫斯病披露 · Tokyo, Japan日本东京

Publicly disclosed Graves’ disease (Basedow’s disease) — autoimmune hyperthyroidism driven by TSH-receptor antibodies. Took pause from work for treatment; later returned to acting.公开披露格雷夫斯病(Basedow病)——由TSH受体抗体驱动的自身免疫性甲状腺功能亢进。曾暂停工作接受治疗,其后回归演艺。

Genetic factor: 遗传因素:Autoimmune thyroid disease has polygenic/HLA associations; Japan has substantial clinical literature on Graves’.自身免疫性甲状腺病具多基因/HLA关联;日本对格雷夫斯病有丰富临床文献。

Immune factor: 免疫因素:TSH-receptor stimulating autoantibodies.TSH受体刺激性自身抗体。

Uncertainty: 不确定性:Public Japanese entertainment reporting; treatment modality details not fully specified in sources used here.日本公开娱乐报道;此处来源未完整说明治疗方式细节。

Source来源 ↗ · Public disclosure + NIDDK Graves’ overview

Photo: Dick Thomas Johnson · CC BY 2.0 · Commons

Woody Guthrie
American美国

Woody Guthrie伍迪·格思里

American美国Genetic遗传Public figure公众人物Self-affected本人患病Autosomal dominant (AD)常染色体显性(AD)Expanded扩展
huntington

Folk singer / Huntington’s public case民谣歌手 / 亨廷顿病公开个案 · Oklahoma / New York, USA (historical)美国俄克拉何马 / 纽约(历史)

Lived with and died of Huntington’s disease (HTT CAG repeat expansion). His illness and the Guthrie family’s advocacy helped bring Huntington’s into public and research focus (later linked to Nancy Wexler’s work).患亨廷顿病(HTT CAG重复扩展)并因此去世。其病情与格思里家族倡导推动了亨廷顿病进入公众与研究视野(其后与Nancy Wexler等工作关联)。

Genetic factor: 遗传因素:Autosomal-dominant HTT expansion; age-dependent penetrance.常染色体显性HTT扩展;年龄依赖外显。

Uncertainty: 不确定性:Historical biography from well-documented public sources; modern molecular confirmation of his allele length is not re-asserted from primary lab records here.历史传记来自充分公开记载;其等位基因重复长度的现代分子确认此处不据一手实验室记录再断言。

Source来源 ↗ · HDSA / public biography

Photo: New York World-Telegram and the Sun staff photographer: Al Aumuller · Public domain · Commons

Nancy Wexler
American美国

Nancy Wexler南希·韦克斯勒

American美国Genetic遗传Public figure公众人物Family / relative narrative家族 / 亲属叙述Autosomal dominant (AD)常染色体显性(AD)Expanded扩展
huntington

Geneticist / Huntington’s family researcher-advocate遗传学家 / 亨廷顿病家族研究者与倡导者 · USA / Venezuela pedigree fieldwork (historical)美国 / 委内瑞拉家系田野(历史)

Grew up with Huntington’s in her family (mother Leonore). Led large Venezuelan pedigree work that enabled mapping/cloning of HTT; major public face of Huntington’s genetic advocacy.家族有亨廷顿病(母亲Leonore)。主导委内瑞拉大家系研究,助力HTT定位/克隆;亨廷顿病遗传倡导的重要公众人物。

Genetic factor: 遗传因素:Family risk for AD Huntington’s; scientific contribution to gene discovery.亨廷顿病AD家族风险;对致病基因发现有科学贡献。

Uncertainty: 不确定性:Personal predictive-testing status is private; card focuses on public family/scientific narrative.个人预测性检测状态属隐私;本卡片聚焦公开家族/科学叙述。

Source来源 ↗ · NHGRI / public profiles

Photo: Group_photo_at_Cabaret_Benefit_2009.jpg: Rubenstein derivative work: Tabercil (talk) · CC BY 2.0 · Commons

American美国

Lorenzo Odone洛伦佐·奥多内

American美国Genetic遗传Public figure公众人物Child patient儿童患者X-linked (XL)X连锁(XL)Expanded扩展
ald

ALD child patient (public family story)肾上腺脑白质营养不良患儿(公开家庭故事) · Washington, D.C. area, USA (family base)美国华盛顿特区一带(家庭基地)

Childhood X-linked adrenoleukodystrophy (ALD). Parents Augusto and Michaela Odone publicly pursued experimental oil therapies (‘Lorenzo’s Oil’); story widely documented in media and film. Illustrates XL metabolic leukodystrophy and parent-driven advocacy.儿童期X连锁肾上腺脑白质营养不良(ALD)。父母Augusto与Michaela公开推动试验性油脂疗法(“洛伦佐的油”);媒体与电影广泛记载。体现XL代谢性脑白质病与家长倡导。

Genetic factor: 遗传因素:ABCD1-related X-linked ALD; boys typically more severely affected.ABCD1相关X连锁ALD;男孩通常更重。

Uncertainty: 不确定性:Therapy efficacy debates persist in literature; card is a public-history case, not a treatment endorsement.疗法疗效争议在文献中仍存;本卡片为公开历史个案,非治疗背书。

Source来源 ↗ · NINDS / public family history

Monogram avatar (no free portrait located).字母头像(未找到自由肖像)。

Sharon Osbourne
British / American英国 / 美国

Sharon Osbourne莎朗·奥斯本

British / American英国 / 美国Genetic遗传Public figure公众人物Self-affected本人患病Autosomal dominant (AD)常染色体显性(AD)Expanded扩展
brca

TV personality / public BRCA risk-reducing surgery电视名人 / 公开BRCA风险降低手术 · Los Angeles / London (public bases)洛杉矶 / 伦敦(公开基地)

Publicly disclosed carrying a breast-cancer predisposition gene (widely reported as BRCA1) and underwent preventive double mastectomy (2012). Daughter Kelly later reported the same BRCA1 finding — family genetic-risk narrative.公开披露携带乳腺癌易感基因(广泛报道为BRCA1),并于2012年接受预防性双侧乳腺切除。女儿Kelly其后亦公开BRCA1发现——家族遗传风险叙述。

Genetic factor: 遗传因素:BRCA1 germline risk; risk-reducing surgery example alongside Jolie.BRCA1胚系风险;与朱莉并列的风险降低手术范例。

Uncertainty: 不确定性:Entertainment-press disclosure; full lab report not public. Prior colon cancer history is separate from BRCA breast-risk decision.娱乐媒体披露;完整实验室报告未公开。既往结肠癌史与BRCA乳腺风险决策分开。

Source来源 ↗ · BBC / Hello! interview coverage

Photo: Eva Rinaldi · CC BY-SA 2.0 · Commons

Kelly Osbourne
British / American英国 / 美国

Kelly Osbourne凯莉·奥斯本

British / American英国 / 美国Genetic遗传Public figure公众人物Family / relative narrative家族 / 亲属叙述Autosomal dominant (AD)常染色体显性(AD)Expanded扩展
brca

TV personality / BRCA1 family disclosure电视名人 / BRCA1家族披露 · Los Angeles / London洛杉矶 / 伦敦

Publicly stated she carries the same BRCA1 predisposition gene as her mother Sharon; participates in cancer-awareness campaigns. Illustrates parent→child transmission messaging for hereditary breast/ovarian cancer risk.公开称与母亲Sharon携带同一BRCA1易感基因;参与癌症认知活动。体现遗传性乳腺/卵巢癌风险的亲子传递沟通。

Genetic factor: 遗传因素:BRCA1 AD inheritance within a publicly disclosed mother–daughter pair.公开母女对中的BRCA1常显遗传。

Uncertainty: 不确定性:Public advocacy statements; clinical details beyond BRCA1 status not asserted.公开倡导陈述;除BRCA1状态外的临床细节不断言。

Source来源 ↗ · Cancer Research UK

Photo: Steve Brace · CC BY 2.0 · Commons

Jack Osbourne
British / American英国 / 美国

Jack Osbourne杰克·奥斯本

British / American英国 / 美国Genetic遗传Immune免疫Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
ms

TV personality / MS disclosure (Osbourne family)电视名人 / 多发性硬化披露(奥斯本家族) · Los Angeles, USA美国洛杉矶

Diagnosed with multiple sclerosis (public 2012). Same family as Sharon/Kelly BRCA disclosures — shows mixed genetic/immune narratives in one public family.确诊多发性硬化(2012年公开)。与Sharon/Kelly的BRCA披露同属一个公众家族——展示同一公开家族中的遗传与免疫叙事交织。

Genetic factor: 遗传因素:MS polygenic susceptibility (e.g. HLA); not monogenic.MS多基因易感(如HLA);非单基因。

Immune factor: 免疫因素:Immune-mediated CNS demyelination.免疫介导中枢脱髓鞘。

Uncertainty: 不确定性:Public celebrity disclosure; MS course details limited.公开名人披露;MS病程细节有限。

Source来源 ↗ · Public disclosure + National MS Society context

Photo: Gage Skidmore · CC BY-SA 3.0 · Commons

Wanda Sykes
American美国

Wanda Sykes旺达·塞克斯

American美国Genetic遗传Public figure公众人物Self-affected本人患病Autosomal dominant (AD)常染色体显性(AD)Expanded扩展
brca

Comedian / public BRCA1 disclosure喜剧演员 / 公开BRCA1披露 · Los Angeles / USA洛杉矶 / 美国

Publicly disclosed a BRCA1 mutation and underwent bilateral mastectomy after DCIS findings; speaks about genetic risk and prevention.公开披露BRCA1突变,并在发现DCIS后接受双侧乳腺切除;谈论遗传风险与预防。

Genetic factor: 遗传因素:BRCA1 germline pathogenic variant.BRCA1胚系致病性变异。

Uncertainty: 不确定性:Public interviews/entertainment reporting; full pathology timeline summarized at high level only.公开访谈/娱乐报道;病理时间线仅高阶摘要。

Source来源 ↗ · Public interviews + ACS context

Photo: Greg Hernandez · CC BY 2.0 · Commons

American美国

KJ Muldoon (Baby KJ)KJ·马尔登(Baby KJ)

American美国Genetic遗传Child patient儿童患者Autosomal recessive (AR)常染色体隐性(AR)Expanded扩展
cps1crispr_trial

Infant / personalized CRISPR base-editing (CPS1)婴儿 / 个性化CRISPR碱基编辑(CPS1) · Philadelphia, USA (CHOP)美国费城(费城儿童医院)

Severe carbamoyl-phosphate synthetase 1 (CPS1) deficiency (urea-cycle disorder). In 2025 received a customized adenine base-editing therapy at CHOP/Penn — widely reported as first personalized CRISPR treatment of its kind. Parents consented publicly via hospital communications.重症氨甲酰磷酸合成酶1(CPS1)缺乏(尿素循环障碍)。2025年在CHOP/宾大接受定制腺嘌呤碱基编辑治疗——被广泛报道为此类首例个性化CRISPR治疗。父母经医院沟通公开同意披露。

Genetic factor: 遗传因素:AR CPS1 variants; in vivo LNP base editing of patient-specific mutation.常隐CPS1变异;针对患者特异突变的体内LNP碱基编辑。

Uncertainty: 不确定性:Early clinical follow-up; not a settled ‘cure’ claim. Long-term outcomes still accruing (NEJM/CHOP public updates).早期临床随访;非已定论“治愈”主张。长期结局仍在积累(NEJM/CHOP公开更新)。

Source来源 ↗ · CHOP / NEJM coverage

Monogram avatar (no free portrait located).字母头像(未找到自由肖像)。

American美国

Jesse Gelsinger杰西·格尔辛格

American美国Genetic遗传Immune免疫Trial participant试验参与者X-linked (XL)X连锁(XL)Expanded扩展
otcgene_therapy

Gene-therapy trial participant (OTC deficiency, deceased)基因治疗试验参与者(OTC缺乏,已故) · Philadelphia / Tucson, USA (trial / home context)美国费城 / 图森(试验/居住语境)

X-linked ornithine transcarbamylase (OTC) deficiency. Died in 1999 after an adenoviral gene-therapy trial at Penn — a watershed for gene-therapy safety oversight worldwide, still cited in China/Asia governance debates.X连锁鸟氨酸氨甲酰转移酶(OTC)缺乏。1999年在宾大腺病毒基因治疗试验后去世——全球基因治疗安全监管分水岭,中国/亚洲治理讨论仍常引用。

Genetic factor: 遗传因素:OTC XL urea-cycle disorder; early in vivo gene-therapy attempt.OTC X连锁尿素循环障碍;早期体内基因治疗尝试。

Immune factor: 免疫因素:Fatal immune response to adenoviral vector was central in investigations.调查认定对腺病毒载体的致死性免疫反应是核心。

Uncertainty: 不确定性:Historical case; card summarizes widely accepted public regulatory history, not new primary records.历史个案;卡片摘要广为接受的公开监管史,非新的一手记录。

Source来源 ↗ · NHGRI / public regulatory history

Monogram avatar (no free portrait located).字母头像(未找到自由肖像)。

American美国

Gunnar Esiason (Boomer Esiason family)贡纳·埃西亚森(Boomer家族)

American美国Genetic遗传Public figure公众人物Child patient儿童患者Autosomal recessive (AR)常染色体隐性(AR)Expanded扩展
cf

CF patient / family advocacy (Boomer Esiason Foundation)囊性纤维化患者 / 家族倡导(Boomer Esiason基金会) · New York / New Jersey, USA美国纽约 / 新泽西

Son of NFL quarterback Boomer Esiason; publicly living with cystic fibrosis (CFTR). Family founded major CF fundraising/advocacy. Classic parent–child genetic disease public narrative.NFL四分卫Boomer Esiason之子;公开患囊性纤维化(CFTR)。家族创立重要CF筹款/倡导。典型亲子遗传疾病公开叙述。

Genetic factor: 遗传因素:AR CFTR-related CF.常隐CFTR相关囊性纤维化。

Uncertainty: 不确定性:Public sports-media/foundation biography; genotype details not asserted.公开体育媒体/基金会传记;基因型细节不断言。

Source来源 ↗ · Boomer Esiason Foundation

Monogram avatar (no free portrait located).字母头像(未找到自由肖像)。

Tionne “T-Boz” Watkins
American美国

Tionne “T-Boz” Watkins提奥妮·“T-Boz”·沃特金斯

American美国Genetic遗传Public figure公众人物Self-affected本人患病Autosomal recessive (AR)常染色体隐性(AR)Expanded扩展
scd

Singer (TLC) / sickle cell disease advocate歌手(TLC)/ 镰状细胞病倡导者 · Atlanta / USA亚特兰大 / 美国

Publicly living with sickle cell disease (SCD) since childhood; longstanding awareness advocacy. Complements Victoria Gray’s CRISPR therapy milestone with a classic entertainment SCD narrative.自幼公开患镰状细胞病(SCD);长期认知倡导。与Victoria Gray的CRISPR疗法里程碑互补,呈现娱乐界经典SCD叙述。

Genetic factor: 遗传因素:AR HBB sickle mutation.常隐HBB镰变。

Uncertainty: 不确定性:Public entertainment biography; clinical severity course not fully detailed here.公开娱乐传记;临床严重度病程此处未详述。

Source来源 ↗ · Public disclosure + CDC SCD overview

Photo: The Come Up Show from Canada · CC BY 2.0 · Commons

Albert “Prodigy” Johnson
American美国

Albert “Prodigy” Johnson艾伯特·“Prodigy”·约翰逊

American美国Genetic遗传Public figure公众人物Self-affected本人患病Autosomal recessive (AR)常染色体隐性(AR)Expanded扩展
scd

Rapper (Mobb Deep) / sickle cell public case说唱歌手(Mobb Deep)/ 镰状细胞公开个案 · New York, USA美国纽约

Lived publicly with sickle cell disease; wrote about crises and care. Died 2017; widely discussed SCD complications in coverage.公开患镰状细胞病;著述危机与照护。2017年去世;报道广泛讨论SCD并发症。

Genetic factor: 遗传因素:AR SCD.常隐镰状细胞病。

Uncertainty: 不确定性:Cause-of-death reporting varied across outlets; card focuses on lifelong public SCD identity.死因报道各媒体不一;卡片聚焦其终身公开SCD身份。

Source来源 ↗ · Public biography + CDC overview

Photo: Shakti · CC BY-SA 3.0 · Commons

Mary Tyler Moore
American美国

Mary Tyler Moore玛丽·泰勒·摩尔

American美国Genetic遗传Immune免疫Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
t1d

Actor / type 1 diabetes advocate演员 / 1型糖尿病倡导者 · New York / Los Angeles, USA美国纽约 / 洛杉矶

Iconic public face of type 1 diabetes for decades; International Chair of JDRF. T1D = autoimmune β-cell destruction with polygenic risk.数十年1型糖尿病标志性公众人物;曾任JDRF国际主席。T1D=自身免疫破坏β细胞,伴多基因风险。

Genetic factor: 遗传因素:HLA/polygenic T1D risk.HLA/多基因T1D风险。

Immune factor: 免疫因素:Autoimmune diabetes.自身免疫性糖尿病。

Uncertainty: 不确定性:Historical public advocacy biography.历史公开倡导传记。

Source来源 ↗ · JDRF / public biography

Photo: Alan Light · CC BY 2.0 · Commons

Sonia Sotomayor
American美国

Sonia Sotomayor索尼娅·索托马约尔

American美国Genetic遗传Immune免疫Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
t1d

U.S. Supreme Court Justice / T1D disclosure美国最高法院大法官 / 1型糖尿病披露 · Washington, D.C., USA美国华盛顿特区

Diagnosed with type 1 diabetes as a child; has spoken and written publicly about lifelong management while serving on the Court.幼年确诊1型糖尿病;在最高法院任职期间公开谈及终身管理。

Genetic factor: 遗传因素:T1D polygenic/HLA risk.T1D多基因/HLA风险。

Immune factor: 免疫因素:Autoimmune β-cell loss.自身免疫性β细胞丧失。

Uncertainty: 不确定性:Public autobiographical disclosure; private medical details not asserted.公开自传式披露;私密医疗细节不断言。

Source来源 ↗ · Public autobiography / Court biography context

Photo: Collection of the Supreme Court of the United States, Steve Petteway source · Public domain · Commons

Selma Blair
American美国

Selma Blair塞尔玛·布莱尔

American美国Genetic遗传Immune免疫Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
ms

Actor / MS disclosure & advocacy演员 / 多发性硬化披露与倡导 · Los Angeles, USA美国洛杉矶

Public MS diagnosis (2018); documentary and advocacy raised visibility of immune-mediated demyelinating disease alongside Applegate/Jack Osbourne.2018年公开MS诊断;纪录片与倡导提升免疫介导脱髓鞘病可见度,与Applegate/Jack Osbourne并列。

Genetic factor: 遗传因素:MS polygenic risk.MS多基因风险。

Immune factor: 免疫因素:CNS autoimmune demyelination.中枢自身免疫脱髓鞘。

Uncertainty: 不确定性:Public celebrity/documentary narrative.公开名人/纪录片叙述。

Source来源 ↗ · Public disclosure + National MS Society

Photo: Joella Marano · CC BY-SA 2.0 · Commons

American美国

Joel Miller (CureDuchenne family)乔尔·米勒(CureDuchenne家族)

American美国Genetic遗传Child patient儿童患者X-linked (XL)X连锁(XL)Expanded扩展
duchenne

Duchenne family advocacy (parents Debra & Paul Miller)杜氏肌营养不良家族倡导(父母Debra与Paul Miller) · California, USA (foundation base)美国加利福尼亚(基金会基地)

Parents Debra and Paul Miller founded CureDuchenne after son Joel’s Duchenne muscular dystrophy (DMD, DMD gene, XL) diagnosis. Major public funder/advocate for Duchenne research including genetic medicines.父母Debra与Paul在儿子Joel确诊杜氏肌营养不良(DMD基因,X连锁)后创立CureDuchenne。杜氏研究(含基因药物)重要公开资助/倡导者。

Genetic factor: 遗传因素:XL DMD (dystrophin).X连锁DMD(抗肌萎缩蛋白)。

Uncertainty: 不确定性:Foundation-public narrative; individual clinical details kept high-level out of respect for privacy.基金会公开叙述;出于隐私,个人临床细节保持高阶。

Source来源 ↗ · CureDuchenne

Monogram avatar (no free portrait located).字母头像(未找到自由肖像)。

British英国

Charlie Gard查理·加德

British英国Genetic遗传Public figure公众人物Child patient儿童患者Autosomal recessive (AR)常染色体隐性(AR)Expanded扩展
mitochondrial

Infant mitochondrial disease (public UK case)婴儿线粒体病(英国公开个案) · London, UK (GOSH)英国伦敦(大奥蒙德街医院)

Infantile-onset mitochondrial DNA depletion syndrome (RRM2B-related, widely reported). 2017 UK court/media case on experimental therapy access. Parents Chris Gard & Connie Yates became global voices on rare genetic disease decision-making.婴儿起病线粒体DNA耗竭综合征(广泛报道与RRM2B相关)。2017年英国法院/媒体关于试验性治疗可及性的个案。父母成为罕见遗传疾病决策的全球声音。

Genetic factor: 遗传因素:Nuclear-gene mitochondrial disorder (reported RRM2B); not maternal mtDNA-only.核基因线粒体病(报道RRM2B);非单纯母系mtDNA。

Uncertainty: 不确定性:Highly litigated/public case; card does not relitigate court findings — focuses on genetic diagnosis + family advocacy.高度诉讼/公开个案;卡片不重审法院结论——聚焦遗传诊断与家族倡导。

Source来源 ↗ · BBC / public court coverage

Monogram avatar (no free portrait located).字母头像(未找到自由肖像)。

Francis Collins
American美国

Francis Collins弗朗西斯·柯林斯

American美国Genetic遗传Public figure公众人物Scientist / context科学家 / 语境Autosomal recessive (AR)常染色体隐性(AR)Expanded扩展
cf

Scientist / CFTR gene discovery leader科学家 / CFTR基因发现领导者 · Bethesda, Maryland, USA (NIH)美国马里兰州贝塞斯达(NIH)

Not a patient — co-led cloning of CFTR (cystic fibrosis gene). Later NIH director; bridges classic Mendelian genetics to modern genomic medicine referenced across CF advocacy cases.非患者——共同领导CFTR(囊性纤维化基因)克隆。其后任NIH院长;连接经典孟德尔遗传与现代基因组医学,并与CF倡导个案呼应。

Genetic factor: 遗传因素:CFTR discovery foundational for CF genetic medicine.CFTR发现奠基囊性纤维化遗传医学。

Uncertainty: 不确定性:Scientist context card, not a disease disclosure.科学家语境卡片,非疾病披露。

Institutions: 机构:NIHNIH

Source来源 ↗ · NHGRI

Photo: National Institutes of Health, United States Department of Health and Human Services · Public domain · Commons

Henrietta Lacks
American美国

Henrietta Lacks海拉·拉克斯

American美国Genetic遗传Public figure公众人物Family / relative narrative家族 / 亲属叙述Complex / polygenic复杂 / 多基因Expanded扩展
cancer_genomics

HeLa cell origin / medical genetics ethics landmarkHeLa细胞来源 / 医学遗传伦理里程碑 · Baltimore / Virginia, USA (historical)美国巴尔的摩 / 弗吉尼亚(历史)

Died of aggressive cervical cancer (1951); cells taken without consent became HeLa line — foundational for virology, cancer, and genetic research. HPV-related cancer biology + consent/genomics ethics (family still advocates).1951年死于侵袭性宫颈癌;未经同意取材的细胞成为HeLa系——病毒学、癌症与遗传研究基石。HPV相关癌症生物学 + 同意/基因组伦理(家族仍在倡导)。

Genetic factor: 遗传因素:Cancer genomics/HPV oncogenesis research heritage; not a classic Mendelian ‘patient gene’ card.癌症基因组/HPV致癌研究遗产;非经典孟德尔“患者基因”卡片。

Uncertainty: 不确定性:Weaker as a ‘genetic disease celebrity’ case — included for genomics ethics + family advocacy context.作为“遗传疾病名人”个案较弱——因基因组伦理与家族倡导语境列入。

Institutions: 机构:Johns Hopkins霍普金斯

Source来源 ↗ · Johns Hopkins / public history

Photo: Oregon State University · CC BY-SA 2.0 · Commons

Chinese中国

Unnamed Chinese SMA infants (Zolgensma / gene therapy coverage)未具名中国SMA婴儿(Zolgensma/基因治疗报道)

Chinese中国Genetic遗传Asia亚洲Child patient儿童患者Autosomal recessive (AR)常染色体隐性(AR)Expanded扩展
smagene_therapy

Pediatric SMA gene-therapy families (media-reported)儿科SMA基因治疗家庭(媒体报道) · China (multi-city; pin = Beijing approximate)中国(多城;标记为北京近似)

Chinese media and hospital communications since ~2019–2024 have covered infants with spinal muscular atrophy (SMN1-related SMA) receiving onasemnogene abeparvovec (Zolgensma) or entering domestic gene-therapy pathways. Identities usually withheld; included as Asia-priority family/child genetic therapy cluster.约2019–2024年以来中国媒体与医院通报报道SMN1相关脊肌萎缩症(SMA)婴儿接受onasemnogene abeparvovec(Zolgensma)或进入国产基因治疗路径。身份通常不公开;作为亚洲优先的亲子遗传治疗集群列入。

Genetic factor: 遗传因素:AR SMN1 SMA; AAV9 gene replacement delivers SMN.常隐SMN1型SMA;AAV9基因替代递送SMN。

Uncertainty: 不确定性:Composite of multiple anonymized media cases — not a single verified named biography. Map pin approximate. Cross-check any clinical claim against primary hospital notices.多个匿名媒体个案的合成——非单一具名核实传记。地图标记近似。任何临床主张请核对医院一手通报。

Source来源 ↗ · SMA advocacy context + China media cluster (anonymized)

Monogram avatar (no free portrait located).字母头像(未找到自由肖像)。

Chinese中国

Lulu & Nana (He Jiankui CCR5-edited twins)露露与娜娜(贺建奎CCR5编辑双胞胎)

Chinese中国Genetic遗传Immune免疫Asia亚洲Child patient儿童患者Unknown / not specified未知 / 未标明
crispr_trialhiv_ccr5

Germline-edited children (identity partly pseudonymous)生殖系编辑儿童(身份部分化名) · Shenzhen / southern China深圳 / 中国南方

Claimed CCR5 embryo edits intended for HIV resistance (2018). Children known publicly via pseudonyms; long-term health incompletely documented. Family/child genetic-engineering ethics landmark paired with He Jiankui scientist card.2018年宣称CCR5胚胎编辑以期抗HIV。儿童以化名公开;长期健康记录不完整。与贺建奎科学家卡片配对的亲子基因工程伦理里程碑。

Genetic factor: 遗传因素:Heritable CRISPR edits (CCR5); governance catastrophe.可遗传CRISPR编辑(CCR5);治理灾难。

Immune factor: 免疫因素:Intended HIV-entry co-receptor modification.意图改变HIV进入共受体。

Uncertainty: 不确定性:Identities protected/pseudonymous; medical follow-up not fully public. Do not treat as consented patient advocacy biographies.身份受保护/化名;医学随访未完全公开。勿当作经同意的患者倡导传记。

Source来源 ↗ · Nature

Monogram avatar (no free portrait located).字母头像(未找到自由肖像)。

Chinese / SE Asian中国 / 东南亚

Asia β-thalassemia gene-therapy families (composite)亚洲β地中海贫血基因治疗家庭(合成)

Chinese / SE Asian中国 / 东南亚Genetic遗传Asia亚洲Child patient儿童患者Autosomal recessive (AR)常染色体隐性(AR)Expanded扩展
thalassemiagene_therapycrispr_trial

Trial/family cluster (China & SE Asia reporting)试验/家庭集群(中国与东南亚报道) · Southern China / SE Asia (pin = Guangzhou)中国南方 / 东南亚(标记广州)

β-thalassemia is highly prevalent in southern China and SE Asia. Public reports cover children/young adults in gene-therapy and base-editing trials (including China programs related to BCL11A/HBB pathways). Names often withheld — Asia-priority family genetic disease cluster.β地中海贫血在中国南方与东南亚高发。公开报道涵盖基因治疗与碱基编辑试验中的儿童/青年(含中国BCL11A/HBB相关项目)。姓名常不公开——亚洲优先的家族遗传疾病集群。

Genetic factor: 遗传因素:AR HBB β-thalassemia; gene therapy / editing restores hemoglobin production pathways.常隐HBB β地贫;基因治疗/编辑恢复血红蛋白生成路径。

Uncertainty: 不确定性:Composite anonymized reporting — not one named biography. Verify against trial registries/hospital notices before citing clinically.匿名报道合成——非单一具名传记。临床引用前请核对试验注册/医院通报。

Source来源 ↗ · WHO thalassaemia + regional trial coverage

Monogram avatar (no free portrait located).字母头像(未找到自由肖像)。

British英国

Alice Martineau爱丽丝·马蒂诺

British英国Genetic遗传Public figure公众人物Self-affected本人患病Autosomal recessive (AR)常染色体隐性(AR)Expanded扩展
cf

British singer / cystic fibrosis public case英国歌手 / 囊性纤维化公开个案 · London, UK英国伦敦

Singer-songwriter who publicly lived with cystic fibrosis; debut album and media interviews raised CF visibility in the UK before her death in 2003.公开患囊性纤维化的创作型歌手;首专与媒体访谈提升英国CF可见度;2003年去世。

Genetic factor: 遗传因素:AR CFTR CF.常隐CFTR囊性纤维化。

Uncertainty: 不确定性:Historical entertainment biography.历史娱乐传记。

Source来源 ↗ · Public biography + CFF disease context

Monogram avatar (no free portrait located).字母头像(未找到自由肖像)。

Jet Li (李连杰)
Chinese / Singaporean中国 / 新加坡

Jet Li (李连杰)李连杰

Chinese / Singaporean中国 / 新加坡Genetic遗传Immune免疫Asia亚洲Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
hashimoto

Actor / martial artist — Hashimoto’s public disclosure演员 / 武术家 — 桥本甲状腺炎公开披露 · Beijing / Singapore / global film bases北京 / 新加坡 / 全球影视基地

Publicly disclosed Hashimoto’s thyroiditis (autoimmune hypothyroidism). Has spoken about thyroid management and adjusting career intensity for health.公开披露桥本甲状腺炎(自身免疫性甲状腺功能减退)。曾谈及甲状腺管理与因健康调整事业强度。

Genetic factor: 遗传因素:Autoimmune thyroid disease has complex polygenic risk (HLA and other loci); not a single-gene Mendelian case.自身免疫甲状腺病有复杂多基因风险(HLA及其他位点);非单基因孟德尔个案。

Immune factor: 免疫因素:Classic organ-specific autoimmunity against thyroid antigens.针对甲状腺抗原的经典器官特异性自身免疫。

Uncertainty: 不确定性:Details from entertainment interviews, not a published genotype study.细节来自娱乐访谈,非发表基因型研究。

Source来源 ↗ · Public interviews / Wikipedia summary

Photo: Robert Scoble · CC BY 2.0 · Commons

Kim Woo-bin
South Korean韩国

Kim Woo-bin金宇彬

South Korean韩国Genetic遗传Immune免疫Asia亚洲Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
npc_ebv

South Korean actor — nasopharyngeal cancer survivor advocacy韩国演员 — 鼻咽癌康复倡导 · Seoul, South Korea韩国首尔

Diagnosed with nasopharyngeal carcinoma (2017); completed treatment and returned to acting. NPC is strongly associated with EBV and has higher incidence in East/Southeast Asia.2017年确诊鼻咽癌;完成治疗后复出。鼻咽癌与EBV密切相关,东亚/东南亚发病率较高。

Genetic factor: 遗传因素:NPC risk involves host genetics + EBV; no single public pathogenic variant disclosed.鼻咽癌风险涉及宿主遗传+EBV;无公开单一致病变异披露。

Immune factor: 免疫因素:EBV-linked mucosal malignancy; immune surveillance context.EBV相关黏膜恶性肿瘤;免疫监视语境。

Uncertainty: 不确定性:Personal molecular EBV/genomic details not public clinical records.个人EBV/基因组分子细节非公开临床记录。

Source来源 ↗ · Public press / Wikipedia

Photo: KIYOUNG KIM · CC BY 2.0 · Commons

Choi Daniel
South Korean韩国

Choi Daniel崔丹尼尔

South Korean韩国Genetic遗传Immune免疫Asia亚洲Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
uc_ibd

South Korean actor — ulcerative colitis disclosure韩国演员 — 溃疡性结肠炎披露 · Seoul, South Korea韩国首尔

Publicly discussed living with ulcerative colitis (IBD), including work interruptions for flares — immune-mediated gut disease with polygenic risk.公开谈及溃疡性结肠炎(IBD)生活,包括因发作中断工作——免疫介导肠道病,多基因风险。

Genetic factor: 遗传因素:UC has complex genetics (HLA and many GWAS loci); no public Mendelian gene for him.溃疡性结肠炎为复杂遗传;其人无公开孟德尔基因。

Immune factor: 免疫因素:Immune-mediated IBD; mucosal inflammation.免疫介导IBD;黏膜炎症。

Uncertainty: 不确定性:Severity and therapies from entertainment press, not a medical case report.病情与疗法来自娱乐报道,非医学病例报告。

Source来源 ↗ · Public press / Wikipedia

Photo: Wonderlust08 · CC BY-SA 4.0 · Commons

Rino Sashihara
Japanese日本

Rino Sashihara指原莉乃

Japanese日本Genetic遗传Immune免疫Asia亚洲Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
graves

Japanese idol / TV personality — Graves’ disease日本偶像 / 艺人 — 格雷夫斯病 · Tokyo, Japan日本东京

Announced Graves’ disease (autoimmune hyperthyroidism) during HKT48 era; eye/thyroid symptoms and treatment pauses were publicly discussed.在HKT48时期公布格雷夫斯病(自身免疫性甲亢);眼/甲状腺症状与治疗暂停曾公开讨论。

Genetic factor: 遗传因素:Graves’ has complex polygenic autoimmune risk.格雷夫斯病为复杂多基因自身免疫风险。

Immune factor: 免疫因素:TSH-receptor stimulating autoantibodies.TSH受体刺激性自身抗体。

Uncertainty: 不确定性:Entertainment disclosure; antibody titers not published.娱乐披露;抗体滴度未发表。

Source来源 ↗ · Public press / Wikipedia

Photo: Dick Thomas Johnson from Tokyo, Japan · CC BY 2.0 · Commons

Amitabh Bachchan
Indian印度

Amitabh Bachchan阿米特阿布·巴强

Indian印度Genetic遗传Immune免疫Asia亚洲Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
myasthenia

Indian film icon — myasthenia gravis public case印度影坛偶像 — 重症肌无力公开个案 · Mumbai, India印度孟买

Long publicly associated with myasthenia gravis (autoimmune neuromuscular junction disease) after critical illness in the 1980s; major South Asian household name linking MG awareness to film culture.1980年代危重病后长期公开与重症肌无力(自身免疫神经肌肉接头病)关联;南亚家喻户晓,将MG认知与电影文化相连。

Genetic factor: 遗传因素:MG is autoimmune; rare congenital myasthenic syndromes are genetic — his public narrative is acquired autoimmune MG.MG多为自身免疫;罕见先天性肌无力综合征为遗传——其公开叙述为获得性自身免疫MG。

Immune factor: 免疫因素:AChR (or related) autoantibodies impair neuromuscular transmission.AChR(或相关)自身抗体损害神经肌肉传递。

Uncertainty: 不确定性:Historical medical details from biographies/press; antibody subtype not re-verified here.历史医学细节来自传记/媒体;抗体亚型此处未再核实。

Source来源 ↗ · Public biography / Wikipedia

Photo: File:Amitabh Bacchan and Shrinivas Kulkarni.jpg: Shrinivaskulkarni1388 derivative work: Junior Jumper · CC BY-SA 4.0 · Commons

Missy Elliott
American美国

Missy Elliott蜜西·艾略特

American美国Genetic遗传Immune免疫Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
graves

Rapper / producer — Graves’ disease说唱歌手 / 制作人 — 格雷夫斯病 · Virginia / USA美国弗吉尼亚一带

Publicly disclosed Graves’ disease; spoke about weight/appearance changes and stepping back from touring.公开披露格雷夫斯病;谈及体重/外观变化与暂别巡演。

Genetic factor: 遗传因素:Complex autoimmune genetics.复杂自身免疫遗传。

Immune factor: 免疫因素:Autoimmune hyperthyroidism.自身免疫性甲亢。

Uncertainty: 不确定性:Interview-based disclosure.基于访谈的披露。

Source来源 ↗ · Public interviews / Wikipedia

Photo: Atlantic Records · CC BY-SA 4.0 · Commons

Wendy Williams
American美国

Wendy Williams温迪·威廉姆斯

American美国Genetic遗传Immune免疫Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
graves

TV host — Graves’ disease public journey电视主持人 — 格雷夫斯病公开历程 · New York / USA美国纽约一带

Long public history with Graves’ disease and related complications; talk-show absences made autoimmune thyroid disease highly visible in US daytime media.长期公开的格雷夫斯病及相关并发症病史;脱口秀缺席使自身免疫甲状腺病在美国日间媒体高度可见。

Genetic factor: 遗传因素:Complex polygenic autoimmune risk.复杂多基因自身免疫风险。

Immune factor: 免疫因素:Graves’ autoimmune hyperthyroidism.格雷夫斯自身免疫性甲亢。

Uncertainty: 不确定性:Media health updates; not a peer-reviewed case series.媒体健康更新;非同行评议病例系列。

Source来源 ↗ · Public press / Wikipedia

Photo: WBLS · CC BY 3.0 · Commons

Nick Cannon
American美国

Nick Cannon尼克·坎农

American美国Genetic遗传Immune免疫Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
sle

Entertainer — lupus (SLE) disclosure艺人 — 狼疮(SLE)披露 · Los Angeles / USA美国洛杉矶

Diagnosed with lupus (SLE) around 2012 after kidney concerns; has discussed flares and autoimmune awareness — male SLE public figure.约2012年因肾脏问题确诊狼疮(SLE);谈及发作与自身免疫认知——男性SLE公众人物。

Genetic factor: 遗传因素:SLE has strong complex genetic architecture; no public Mendelian gene for him.SLE有强复杂遗传结构;其人无公开孟德尔基因。

Immune factor: 免疫因素:Systemic autoimmune disease; multi-organ risk including kidney.系统性自身免疫病;多器官风险含肾脏。

Uncertainty: 不确定性:Entertainment press disclosure.娱乐媒体披露。

Source来源 ↗ · Public interviews / Wikipedia

Photo: Cameron Woods · CC BY-SA 4.0 · Commons

Seal
British英国

Seal希尔(Seal)

British英国Genetic遗传Immune免疫Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
sle

Singer — discoid lupus / facial scarring public story歌手 — 盘状狼疮 / 面部瘢痕公开故事 · London / Los Angeles伦敦 / 洛杉矶

Childhood discoid lupus erythematosus caused distinctive facial scarring he has openly discussed — cutaneous autoimmune lupus spectrum.童年盘状红斑狼疮导致标志性面部瘢痕,他曾公开谈论——皮肤型自身免疫狼疮谱系。

Genetic factor: 遗传因素:Lupus spectrum diseases have complex genetics.狼疮谱系疾病为复杂遗传。

Immune factor: 免疫因素:Cutaneous autoimmune lupus (DLE).皮肤型自身免疫狼疮(DLE)。

Uncertainty: 不确定性:Biography/interview based; systemic vs cutaneous details vary by source.基于传记/访谈;系统与皮肤型细节因来源而异。

Source来源 ↗ · Public biography / Wikipedia

Photo: Danielle G. Campbell · CC BY-SA 4.0 · Commons

Halsey
American美国

Halsey哈莉(Halsey)

American美国Genetic遗传Public figure公众人物Self-affected本人患病Autosomal dominant (AD)常染色体显性(AD)Expanded扩展
eds

Singer — Ehlers–Danlos / endometriosis public advocate歌手 — 埃勒斯–当洛 / 子宫内膜异位公开倡导 · New Jersey / Los Angeles, USA美国新泽西 / 洛杉矶

Has publicly discussed Ehlers–Danlos syndrome (connective-tissue genetic spectrum), endometriosis, and related chronic illness — major pop voice for EDS visibility.公开谈及埃勒斯–当洛综合征(结缔组织遗传谱系)、子宫内膜异位及相关慢性病——流行乐界EDS可见度重要声音。

Genetic factor: 遗传因素:EDS comprises heritable connective-tissue disorders; her subtype specifics are not fully public lab detail.EDS含可遗传结缔组织病;其亚型实验室细节未完全公开。

Uncertainty: 不确定性:Self-disclosed medical narrative; molecular subtype not independently published.自我披露医学叙述;分子亚型未独立发表。

Source来源 ↗ · Public interviews / Wikipedia

Photo: Justin Higuchi · CC BY 4.0 · Commons

Sia
Australian澳大利亚

Sia希雅

Australian澳大利亚Genetic遗传Public figure公众人物Self-affected本人患病Autosomal dominant (AD)常染色体显性(AD)Expanded扩展
eds

Singer-songwriter — Ehlers–Danlos disclosure创作歌手 — 埃勒斯–当洛披露 · Australia / Los Angeles澳大利亚 / 洛杉矶

Publicly stated she has Ehlers–Danlos syndrome; chronic pain and hypermobility themes appear in interviews.公开称患有埃勒斯–当洛综合征;访谈常涉慢性疼痛与关节过度活动。

Genetic factor: 遗传因素:Heritable connective-tissue disorder spectrum; subtype not fully public.可遗传结缔组织病谱系;亚型未完全公开。

Uncertainty: 不确定性:Interview disclosure without published genotype.访谈披露,无发表基因型。

Source来源 ↗ · Public interviews / Wikipedia

Photo: Sia performing at The Parish (a music venue) during SxSW in Austin, 2006 · CC BY-SA 2.0 · Commons

Dan Reynolds
American美国

Dan Reynolds丹·雷诺兹

American美国Genetic遗传Immune免疫Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
as_spa

Imagine Dragons frontman — ankylosing spondylitisImagine Dragons主唱 — 强直性脊柱炎 · Las Vegas / USA美国拉斯维加斯

Diagnosed with ankylosing spondylitis; has discussed chronic pain, treatment, and touring with AS — HLA-B27–linked immune genetic disease archetype in rock.确诊强直性脊柱炎;谈及慢性疼痛、治疗与带病巡演——摇滚界HLA-B27相关免疫遗传病典型。

Genetic factor: 遗传因素:Strong association with HLA-B27; complex immune genetics.与HLA-B27强相关;复杂免疫遗传。

Immune factor: 免疫因素:Autoimmune / autoinflammatory spondyloarthritis.自身免疫 / 自身炎症性脊柱关节炎。

Uncertainty: 不确定性:HLA-B27 status for him personally not confirmed in a genetics paper here.其个人HLA-B27状态此处无遗传学论文确认。

Source来源 ↗ · Public interviews / Wikipedia

Photo: Davidwbaker · CC BY-SA 4.0 · Commons

Michael J. Fox
Canadian / American加拿大 / 美国

Michael J. Fox迈克尔·J·福克斯

Canadian / American加拿大 / 美国Genetic遗传Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
parkinson

Actor — Parkinson’s research & genetic risk advocacy演员 — 帕金森研究与遗传风险倡导 · New York / Vancouver纽约 / 温哥华

Young-onset Parkinson’s disease; founded The Michael J. Fox Foundation, a major funder of Parkinson’s genetics (LRRK2, GBA, etc.). Personal cause may be idiopathic; public impact is heavily genetic-research oriented.早发型帕金森病;创立迈克尔·J·福克斯基金会,是帕金森遗传(LRRK2、GBA等)研究的主要资助方。个人病因或为特发性;公众影响高度指向遗传研究。

Genetic factor: 遗传因素:Parkinson’s includes monogenic forms and polygenic risk; his own variant status is private — card emphasizes research advocacy.帕金森含单基因形式与多基因风险;其本人变异状态属隐私——卡片强调研究倡导。

Uncertainty: 不确定性:Do not assert a specific pathogenic variant for him without primary disclosure.无一手披露时不断言其特定致病变异。

Source来源 ↗ · Michael J. Fox Foundation / public biography

Photo: Chuck Kennedy (Pete for America) · Public domain · Commons

Chadwick Boseman
American美国

Chadwick Boseman查德维克·博斯曼

American美国Genetic遗传Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
colorectal_cancer

Actor — young-onset colorectal cancer (public after death)演员 — 早发结直肠癌(身后公开) · South Carolina / Los Angeles, USA美国南卡 / 洛杉矶

Died of colon cancer at 43 (2020) after privately living with disease for years. Catalyzed conversation on early-onset CRC, screening, and hereditary cancer genetic counseling.2020年43岁死于结肠癌,此前多年私下带病。推动早发结直肠癌、筛查与年轻成人遗传性肿瘤咨询讨论。

Genetic factor: 遗传因素:Early-onset CRC raises hereditary syndrome questions (Lynch, polyposis); his germline status was not publicly detailed.早发CRC引发遗传综合征疑问(Lynch、息肉病等);其胚系状态未公开详述。

Uncertainty: 不确定性:No public confirmation of a specific hereditary CRC gene in his case.其个案无公开确认的特定遗传性CRC基因。

Source来源 ↗ · Public obituaries / Wikipedia

Photo: Gage Skidmore · CC BY-SA 2.0 · Commons

Giuliana Rancic
American美国

Giuliana Rancic朱莉安娜·兰西奇

American美国Genetic遗传Public figure公众人物Self-affected本人患病Autosomal dominant (AD)常染色体显性(AD)Expanded扩展
brca

TV personality — BRCA mastectomy disclosure电视名人 — BRCA乳腺切除披露 · Chicago / Los Angeles, USA美国芝加哥 / 洛杉矶

BRCA gene mutation carrier; underwent double mastectomy after breast-cancer diagnosis and publicly documented genetic risk decisions.BRCA基因突变携带者;乳腺癌诊断后接受双侧乳腺切除,并公开记录遗传风险决策。

Genetic factor: 遗传因素:Pathogenic BRCA variant; AD hereditary breast-ovarian cancer syndrome.致病性BRCA变异;常显遗传性乳腺卵巢癌综合征。

Uncertainty: 不确定性:Which BRCA gene (1 vs 2) sometimes summarized loosely in secondary press.次级媒体有时笼统写BRCA1/2。

Source来源 ↗ · Public interviews / Wikipedia

Photo: David Shankbone · CC BY 2.0 · Commons

Ben Stiller
American美国

Ben Stiller本·斯蒂勒

American美国Genetic遗传Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
prostate_cancer

Actor / director — prostate cancer & genetic-awareness advocacy演员 / 导演 — 前列腺癌与遗传认知倡导 · New York / Los Angeles, USA美国纽约 / 洛杉矶

Diagnosed with prostate cancer in mid-40s; publicly urged earlier PSA discussion and highlighted genetic testing/family-risk angles.四十多岁确诊前列腺癌;公开呼吁更早讨论PSA,并强调基因检测/家族风险角度。

Genetic factor: 遗传因素:Prostate cancer has hereditary components (BRCA2, HOXB13, etc.); his personal germline results are not fully public.前列腺癌有遗传成分(BRCA2、HOXB13等);其个人胚系结果未完全公开。

Uncertainty: 不确定性:Advocacy ≠ confirmed public Mendelian variant.倡导≠已确认的公开孟德尔变异。

Source来源 ↗ · Public essays / Wikipedia

Photo: Colleen Sturtevant · CC BY-SA 4.0 · Commons

Annette Funicello
American美国

Annette Funicello安妮特·富尼切洛

American美国Genetic遗传Immune免疫Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
ms

Actress / Mouseketeer — MS public advocate演员 / 米老鼠俱乐部 — 多发性硬化公开倡导 · California, USA (historical)美国加州(历史)

Lived publicly with multiple sclerosis from the 1990s; founded an MS research fund. Classic Hollywood MS narrative.1990年代起公开患多发性硬化;成立MS研究基金。好莱坞MS叙事经典。

Genetic factor: 遗传因素:MS has complex HLA-linked genetics.MS有复杂HLA相关遗传。

Immune factor: 免疫因素:CNS autoimmune demyelinating disease.中枢神经自身免疫脱髓鞘病。

Uncertainty: 不确定性:Historical celebrity medical biography.历史名人医学传记。

Source来源 ↗ · Public biography / Wikipedia

Photo: Chronicle Magazine · Public domain · Commons

Montel Williams
American美国

Montel Williams蒙泰尔·威廉姆斯

American美国Genetic遗传Immune免疫Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
ms

TV host — MS advocacy电视主持人 — 多发性硬化倡导 · New York / USA美国纽约一带

Diagnosed with multiple sclerosis; became a prominent US media advocate for MS research and living with chronic neuroimmune disease.确诊多发性硬化;成为美国媒体中MS研究与慢性神经免疫病生活的重要倡导者。

Genetic factor: 遗传因素:Complex immune genetics (HLA-DRB1 etc.).复杂免疫遗传(HLA-DRB1等)。

Immune factor: 免疫因素:Autoimmune CNS demyelination.自身免疫中枢脱髓鞘。

Uncertainty: 不确定性:Public advocacy narrative.公开倡导叙事。

Source来源 ↗ · Public biography / Wikipedia

Photo: David Shankbone · CC BY-SA 3.0 · Commons

Magic Johnson
American美国

Magic Johnson魔术师约翰逊

American美国Immune免疫Public figure公众人物Self-affected本人患病Unknown / not specified未知 / 未标明Expanded扩展
hiv

NBA legend — HIV public disclosure & immune advocacyNBA传奇 — HIV公开披露与免疫倡导 · Los Angeles, USA美国洛杉矶

Announced HIV infection in 1991; transformed public understanding of HIV as a manageable chronic immune infection and funded HIV awareness.1991年公布感染HIV;改变公众对HIV作为可管理慢性免疫感染的认知并资助宣传。

Immune factor: 免疫因素:HIV targets CD4+ T cells; modern ART maintains immune function.HIV攻击CD4+ T细胞;现代ART维持免疫功能。

Uncertainty: 不确定性:Viral/clinical labs are private; card is public-health narrative.病毒/临床化验属隐私;卡片为公共卫生叙事。

Source来源 ↗ · Public biography / Wikipedia

Photo: Daniel Benavides from Austin, TX · CC BY 2.0 · Commons

Jimmy Carter
American美国

Jimmy Carter吉米·卡特

American美国Immune免疫Public figure公众人物Self-affected本人患病Unknown / not specified未知 / 未标明Expanded扩展
immunotherapy_pd1melanoma

39th US President — melanoma immunotherapy landmark patient美国第39任总统 — 黑色素瘤免疫治疗里程碑患者 · Georgia, USA美国佐治亚

Metastatic melanoma treated with pembrolizumab (anti–PD-1) with widely reported response — brought checkpoint immunotherapy into household political news.转移性黑色素瘤接受帕博利珠单抗(抗PD-1)治疗并被广泛报道缓解——将免疫检查点疗法带入家喻户晓的政治新闻。

Immune factor: 免疫因素:PD-1 checkpoint blockade reactivates anti-tumor T-cell immunity.PD-1检查点阻断重新激活抗肿瘤T细胞免疫。

Uncertainty: 不确定性:Clinical course summarized from public medical updates.病程据公开医学更新概括。

Source来源 ↗ · Public medical updates / Wikipedia

Photo: Department of Defense. Department of the Navy. Naval Photographic Center · Public domain · Commons

Bella Hadid
American美国

Bella Hadid贝拉·哈迪德

American美国Genetic遗传Immune免疫Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
hashimotolyme

Model — Lyme / Hashimoto’s autoimmune public narrative模特 — 莱姆 / 桥本自身免疫公开叙事 · New York / global fashion纽约 / 全球时尚

Has publicly discussed chronic Lyme disease and Hashimoto’s thyroiditis (autoimmune thyroid). Family also prominent in Lyme awareness.公开谈及慢性莱姆病与桥本甲状腺炎(自身免疫甲状腺)。家庭亦以莱姆认知著称。

Genetic factor: 遗传因素:Hashimoto’s complex genetics; Lyme is infectious — genetic susceptibility debated.桥本为复杂遗传;莱姆为感染——遗传易感性有争议。

Immune factor: 免疫因素:Autoimmune thyroid + post-infectious immune symptoms as publicly framed.公开表述为自身免疫甲状腺+感染后免疫症状。

Uncertainty: 不确定性:Chronic Lyme definitions are contested in medicine; treat as public self-report.慢性莱姆医学定义有争议;按公开自述处理。

Source来源 ↗ · Public interviews / Wikipedia

Photo: Gabriel Hutchinson · CC BY-SA 4.0 · Commons

Zoe Saldaña
American美国

Zoe Saldaña佐伊·索尔达娜

American美国Genetic遗传Immune免疫Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
hashimoto

Actor — Hashimoto’s thyroiditis disclosure演员 — 桥本甲状腺炎披露 · Los Angeles / USA美国洛杉矶

Publicly discussed Hashimoto’s thyroiditis and thyroid management while maintaining a major film career.公开谈及桥本甲状腺炎与甲状腺管理,同时维持重大电影事业。

Genetic factor: 遗传因素:Complex autoimmune genetics.复杂自身免疫遗传。

Immune factor: 免疫因素:Autoimmune hypothyroidism.自身免疫性甲减。

Uncertainty: 不确定性:Interview-based.基于访谈。

Source来源 ↗ · Public interviews / Wikipedia

Photo: Kevin Payravi · CC BY-SA 4.0 · Commons

Priyanka Chopra Jonas
Indian / American印度 / 美国

Priyanka Chopra Jonas普利扬卡·乔普拉

Indian / American印度 / 美国Genetic遗传Immune免疫Asia亚洲Public figure公众人物Self-affected本人患病Complex / polygenic复杂 / 多基因Expanded扩展
hashimoto

Actor / singer — thyroid autoimmune public comments演员 / 歌手 — 甲状腺自身免疫公开谈及 · Mumbai / Los Angeles / New York孟买 / 洛杉矶 / 纽约

Has spoken publicly about thyroid issues (often summarized in press as hypothyroidism / Hashimoto’s-spectrum). Bollywood–Hollywood crossover figure for endocrine–autoimmune visibility.公开谈及甲状腺问题(媒体常概括为甲减/桥本谱系)。宝莱坞–好莱坞跨界人物,提升内分泌–自身免疫可见度。

Genetic factor: 遗传因素:Autoimmune thyroid disease — complex genetics.自身免疫甲状腺病——复杂遗传。

Immune factor: 免疫因素:Autoimmune thyroid dysfunction as publicly framed.公开表述为自身免疫甲状腺功能异常。

Uncertainty: 不确定性:Press sometimes conflates hypo vs Hashimoto’s; antibody confirmation not in a medical paper here.媒体有时混淆甲减与桥本;此处无医学论文抗体确认。

Source来源 ↗ · Public interviews / Wikipedia

Photo: Bollywood Hungama · CC BY 3.0 · Commons