U-Hailey Bieber utyhilwe ukuba unemeko yemfuza ebizwa ngokuba yi-ectrodactyly-Kodwa yintoni leyo?

Umxholo

• Yintoni i-ectrodactyly?
• Yintoni ebangela i-ectrodactyly?
• Uphengululo lwe

Iitrola ze-Intanethi ziya kufumana nayiphi na indlela abanokugxeka ngayo imizimba yabantu abadumileyo-yenye yezona ndawo zinetyhefu kwimidiya yoluntu. U-Hailey Bieber, obekade evuleleke malunga nendlela amajelo eendaba ezentlalo ayichaphazela ngayo impilo yakhe yengqondo, kutshanje ucele iitroli ze-Instagram ukuba ziyeke "ukuqhotsa" inxalenye yenkangeleko yakhe ubungayi kulindela ukuba ijongwe kwasekuqaleni: ipinki yakhe.

"Kulungile masingene kwincoko epinki .. kuba ndizihlekisile ngale nto ngonaphakade ukuze ndikwazi ukuxelela wonke umntu ukuba kutheni [iipinki zam] zigqwethekile kwaye zoyikeka," utshilo u-Bieber kwibali le-Instagram. ibonise ifoto yakhe ejongeka pinky, ngokuqinisekileyo, igoso kancinci.

Imodeli emva koko ixelwe ukuba yabelane ngescreen esikhululwe ngoku kwiphepha leWikipedia kwimeko ebizwa ngokuba yi-ectrodactyly, ngokwe Imeyile yemihla ngemihla. "Ndinayo le nto ibizwa ngokuba yi-ectrodactyly kwaye ibangela ukuba iminwe yam epinki ijongeke ngendlela eyenza ngayo," utshilo u-Bieber ngokubhala ecaleni kwesikrini se-Wikipedia, ngokweendaba zase-UK. "Yinto yemfuza, bendinayo ubomi bam bonke. Ke abantu banokuyeka ukundibuza ukuba 'i-wtf ayilunganga ngeminwe yakhe epinki.'"

Yintoni i-ectrodactyly?

I-Ectrodactyly luhlobo lokwahlula-hlula kwesandla / ukwahlula unyawo (Malf. Iziphazamiso (NORD). Imeko inokunika izandla neenyawo imbonakalo "efana neenzipho", kwaye kwezinye iimeko, inokubangela ukubonakala kokuluka phakathi kweminwe okanye iinzwane (ezaziwa njengeyokuhlangana), ngokweNORD.

Nangona i-SHFM inokubonisa ngeendlela ezahlukeneyo, zimbini iindlela eziphambili. Eyokuqala ibizwa ngokuba yi "lobster claw", apho kukho "ngokuqhelekileyo ukungabikho" komnwe ophakathi; "umsantsa omile okwe khoni" kwindawo yomnwe ngokungafaniyo wahlula isandla sibe ziinxalenye ezimbini (esenza isandla sikhangeleke ngathi sineenzipho ngenxa yoko igama), ngokweNORD. Le fomu ye-SHFM ihlala isenzeka ezandleni zozibini, kwaye inokuchaphazela iinyawo, ngombutho ngamnye. Monodactyly, olunye uhlobo oluphambili lwe-SHFM, lubhekisa kukungabikho kwayo yonke iminwe ngaphandle kwepinki, ngokweNORD.

Akukacaci kakuhle ukuba loluphi uhlobo lwe-SHFM Bieber abanga ukuba nayo-ngokucacileyo unayo yonke iminwe eli-10 ezandleni zakhe-kodwa njengoko amanqaku e-NORD, kukho "iintlobo kunye nokudityaniswa kokukhubazeka" okunokwenzeka nge-SHFM, kunye neemeko "zinoluhlu". ngokubanzi kubukhali. " (Inxulumene: Le modeli ine-Genetic Disorder Is Breaking Down Stereotypes)

Yintoni ebangela i-ectrodactyly?

Njengoko u-Bieber uxeliwe kwi-Instagram Stories yakhe, i-ectrodactyly yimeko yofuzo, oku kuthetha ukuba abo banayo bazalwa nayo (mhlawumbi ngenxa yokwakheka kofuzo okanye ukuguqulwa kofuzo olungaqhelekanga), ngokwe-Genetic and Rare Diseases Information Centre (GARD). I-SHFM, ngokubanzi, inokuchaphazela iintsana zamadoda nabasetyhini ngokulinganayo. Phantse enye kuzo zonke iintsana ezingama-18,000 ezisandul 'ukuzalwa zizalwa zineemeko ezithile, ngokwe-NORD. Ngelixa i-SHFM inokuchaphazela amalungu osapho olunye, imeko inokubonisa ngokwahlukileyo kumntu ngamnye. Ifunyaniswa isuselwa "kubume bomzimba obukhoyo ngexesha lokuzalwa" kunye nokuchaneka kwamathambo okufunyenwe siskena se-X-ray, ithi iNORD.

Ubukhulu becala, abantu abanefom ye-SHFM bahlala ubomi obuqhelekileyo, nangona abanye benokuba "nobunzima ekusebenzeni ngokomzimba," kuxhomekeke ekubeni ingalunganga kangakanani na, ngokwe-NORD. Kukwakho "iimeko ezimbalwa kakhulu ze-SHFM" maxa wambi ezihamba nesithulu, ngokophando lowama-2015 olupapashwe kwi- Ijenali eChrisimende yezeMpilo kunye noPhando.

Ngaphandle kwe-Bieber, akukho manani oluntu amaninzi aneendlela ezithile ze-SHFM (okanye ubuncinci ababaninzi abavulekileyo malunga nale meko). Umququzeleli weendaba kunye nomsingathi womboniso wentetho, uBree Walker ekugqibeleni uye waphumela elubala ngoxilongo lwakhe lwe-syndactyly (ephawulwa yiminwe emibini okanye ngaphezulu enewebhu okanye ehlangeneyo) emva kweminyaka efihle izandla zakhe ngaphakathi kwepere yeglavu. Emuva kwii-80s, utshilo uWalker Abantu wayedla ngokuphathwa ngenkohlakalo njengokujongwa aze agqabaze engacelwanga ngabantu angabaziyo ngendlela ezibonakala ngayo izandla neenyawo zakhe. U-Walker uye waba litshantliziyo lamalungelo okhubazeko kwabo baneemeko ezifanayo. (Idibeneyo: UJameela Jamil Uveze nje ukuba une-Ehlers-Danlos Syndrome)

Kwicala lika-Bieber, akacacisanga ukuba, ngokuthe ngqo, i-ectrodactyly iye yabuchaphazela njani ubomi bakhe, kwaye akakhange akhankanye nokuba unazo ezinye iimpazamo ngaphandle kwenkangeleko yomnwe wakhe opinki.

Oko bekutshiwo, kusoloko kufanelekile ukuba ukhumbule ukuba ukuphawula ngomzimba womnye umntu akuze kupholile — ngxi.

Uphengululo lwe