UHailey Bieber Wembulwa Unesimo Sofuzo Esibizwa Nge-Ectrodactyly — Kodwa Yini Lokho?

-Delile

• Yini i-ectrodactyly?
• Yini ebangela i-ectrodactyly?
• Buyekeza kwe-

Ama-troll e-inthanethi azothola noma iyiphi indlela yokugxeka imizimba yosaziwayo — ingenye yezingxenye ezinobuthi kakhulu ezinkundleni zokuxhumana. U-Hailey Bieber, obekade ephumele obala ngokuthi izinkundla zokuxhumana ziyithinta kanjani impilo yakhe yengqondo, muva nje ucele ama-troll ku-Instagram ukuthi ayeke "ukugazinga" ingxenye yokubukeka kwakhe okungenzeka ukuthi ubungeke ulindele ukuthi ibhekisiswe kwasekuqaleni: opinki bakhe.

"Ok asingene engxoxweni e-pinky.. ngoba ngizenze inhlekisa ngalokhu kuze kube phakade ngakho ngingahle ngitshele wonke umuntu ukuthi kungani [ama-pinki ami] egwegwe futhi esabeka," kubhala u-Bieber ku-Instagram Story ukuthi. uveze isithombe sokubukeka kwakhe okubomvana, kuyavunywa, ukuthi uyisigwegwe kancane.

Kubikwa ukuthi imodeli yabelana ngesithombe-skrini esesisusiwe sekhasi le-Wikipedia ngesimo esibizwa nge-ectrodactyly, ngokusho kwe Imeyili Yansuku zonke. "Nginale nto ebizwa nge-ectrodactyly futhi idala ukuthi iminwe yami ibukeke ngendlela ebukeka ngayo," kubikwa ukuthi u-Bieber wabhala eceleni kwesithombe-skrini se-Wikipedia, ephepheni lezindaba lase-UK. "Kuwufuzo, ngiye ngaba nakho konke ukuphila kwami. Ngakho-ke abantu bangayeka ukungibuza ukuthi 'i-wtf ayilungile ngeminwe yakhe ye-pinky.' " (Okuhlobene: Lezi Zici Zemithombo Yezokuxhumana Zikwenza Kube lula Ukuvikela Ukuphawula Okunenzondo Nokukhuthaza Umusa)

Yini i-ectrodactyly?

I-Ectrodactyly iyindlela yokuqhekeka kwezandla / yokuhlukanisa unyawo (SHFM), isifo sofuzo "esibonakala ngokungabi bikho ngokuphelele noma okuyingxenye kweminye iminwe noma izinzwane, okuvame ukuhlanganiswa nemifantu ezandleni noma ezinyaweni," ngokusho kweNational Organisation for Rare Ukuphazamiseka (NORD). Isimo singanikeza izandla nezinyawo ukubukeka "okufana nozipho", futhi kwezinye izimo, kungadala ukubonakala kokuluka phakathi kweminwe noma izinzwane (okwaziwa njenge-syndactyly), ngokwe-NORD.

Yize i-SHFM ingabonisa ngezindlela ezahlukahlukene ezahlukahlukene, kunezindlela ezimbili eziyinhloko. Owokuqala ubizwa nge- "lobster claw" ehlukahlukene, lapho kukhona khona "ngokuvamile ukungabikho" komunwe ophakathi; "ukusikeka okwenziwe ngesigaxa" endaweni yomunwe empeleni kwehlukanisa isandla sibe izingxenye ezimbili (okwenza isandla sibonakale sifana nozipho yingakho igama), ngokweNORD. Leli fomu le-SHFM livame ukwenzeka ezandleni zombili, futhi lingathinta izinyawo, ngokwenhlangano ngayinye. I-Monodactyly, enye indlela eyinhloko ye-SHFM, ibhekisa ekungabikho kweminwe yonke ngaphandle kwe-pinky, ngokwe-NORD.

Akukacaci kahle ukuthi hlobo luni lwe-SHFM u-Bieber athi unalo-ngokusobala unayo yonke iminwe eyi-10 ezandleni zakhe-kodwa njengoba iphawula ye-NORD, kukhona "izinhlobo nezinhlanganisela zokukhubazeka" eziningana ezingenzeka nge-SHFM, futhi izimo "ziyahlukahluka." ngobunzima obukhulu." (Okuhlobene: Le modeli ene-Genetic Disorder Ibhidliza Imibono Ehlukile)

Yini ebangela i-ectrodactyly?

Njengoba kushiwo uBieber kwi-Instagram Stories yakhe, i-ectrodactyly yisimo sezakhi zofuzo, okusho ukuthi labo abanaso bazalwa naso (kungaba ngenxa yokwakheka kwezakhi zofuzo noma ukuguquguquka kwezakhi zofuzo okungahleliwe), ngokusho kweGenetic and Rare Diseases Information Center (GARD). I-SHFM, ngokuvamile, ingathinta abantwana besilisa nabesifazane ngokulinganayo. Cishe ingane eyodwa kweziyi-18,000 ezisanda kuzalwa zizalwa zinalesi simo, ngokwe-NORD. Ngenkathi i-SHFM ingathinta amalungu omndeni ofanayo, lesi simo singavela ngokuhlukile kumuntu ngamunye. Kutholakala ukuthi kususelwa "kuzici zomzimba ezikhona ngesikhathi sokuzalwa" kanye nokungafani kwamathambo okutholwe ngezikena ze-X-ray, kuphawula i-NORD.

Ngokwengxenye enkulu, abantu abanefomu ye-SHFM ngokuvamile baphila impilo ejwayelekile, noma ngabe abanye bangaba "nobunzima ekusebenzeni ngokomzimba," kuya ngokuthi malformation yabo inamandla kangakanani, ngokweNORD. Kukhona futhi "izigameko ezimbalwa ze-SHFM" ngezinye izikhathi ezihambisana nokungezwa, ngokusho kocwaningo lwango-2015 olwanyatheliswa ku- ICRISMED Journal Yezempilo Nocwaningo.

Ngaphandle kukaBieber, azikho izibalo zomphakathi eziningi ezinohlobo oluthile lwe-SHFM (noma okungenani ababaningi abebevulekile ngokuba nalesi simo). Ihange lezindaba nomethuli wohlelo lwezingxoxo, uBree Walker wagcina ephumele obala ngokuxilongwa kwakhe okuhlangene (okubonakala ngeminwe emibili noma ngaphezulu ye-webbed noma ehlanganisiwe) ngemuva kweminyaka efihle izandla zakhe ngaphakathi kwamagilavu. Emuva kuma-80s, uWalker utshele Abantu wayevame ukuphathwa ngonya njengokuhlwaya okubukhali nokuphawula okungacelwanga kubantu angabazi ngendlela izandla nezinyawo zakhe ezibukeka ngayo. U-Walker useqhubeke nokuba yisishoshovu samalungelo okukhubazeka kulabo abanezimo ezifanayo. (Okuhlobene: UJameela Jamil Uvezwe Nje Une-Ehlers-Danlos Syndrome)

Ngokwengxenye kaBieber, akachazanga ukuthi, empeleni, i-ectrodactyly iyithinte kanjani impilo yakhe, futhi akasho nokuthi unakho yini okunye ukukhubazeka ngaphandle kokubonakala komunwe wakhe obomvana.

Lokho kusho, ngaso sonke isikhathi kufanele kukhunjulwe ukuthi ukuphawula emzimbeni womunye umuntu akukaze kube kuhle — isitobhi.

Buyekeza kwe-