Phantse iipesenti ezili-16 zalabo abane-Down syndrome nabo bane-celiac.
Abantu abane-Down syndrome, i-disorder gene disorder, bathambekele ekuhlakuleleni isifo se- celiac kwizinga eliphezulu ngaphezu kwabo bonke abantu. Enyanisweni, isifo se-celiac sinokuchaphazela abantu abangama-16 kuwo wonke umntu onama-100 abane-Down syndrome.
Kutheni oku kwenzekayo? Ngelishwa, oogqirha abaqinisekanga. Kodwa uxhulumano oluqinileyo phakathi kweemeko zombini yinto abazali nabaxhasi babantu abane-Down syndrome kufuneka baqonde, ukuze bakwazi ukujonga iimpawu zesifo se-celiac kwaye bafumane ukuhlolwa okufanelekileyo , ukuba kuyimfuneko.
Iingozi ze-Down Syndrome kunye nezoMpilo
I-Down syndrome ibangelwa yingxaki ngeentsholongwane zakho. Wonke umntu unamaqela angama-23 weeshiyi (ufumana isiqingatha seqela elilodwa ukusuka kunyoko kunye nesigamu esivela kuyihlo), kodwa abantu abane-Down syndrome banezinto eziphathekayo zofuzo kwimizi ethile yesibini: idilesi e-21. Oku kukhokelela kwii-geneticists ezithi "i-trisomy 21," igama lobuchwepheshe be-Down syndrome.
Loo mfuzo ogqithisiweyo ungabakho kwiqanda likamama okanye inzala ka-uyihlo, kwaye umngcipheko we-Down syndrome ukhuphuka uneminyaka yobudala (nokuba mhlawumbi uyise, nangona kungabikho bonke abaphandi bathatha le mbono). Phantse enye kwiintsana ezingama-700 ezelwe eMelika ngamnye ngonyaka-malunga neentsana ezingama-6,000 kwi-totali-ene-Down syndrome.
Abantu abane-Down syndrome baneempawu zobuso ezihlukeneyo , kubandakanywa amehlo e-almond, afana neentloko ezincinane kunye nomlomo kunye nentloko encinci ehlala ephahleni.
Kananjalo banokuba netoni ye-muscle ephantsi, kwaye bahlala befumana imiba yempilo evela kwimbono kunye nokulahlekelwa kwindlebe kwiintsilelo zentliziyo. Bonke abantwana kunye nabantu abadala abane-Down syndrome banesimo esithile sokukhubazeka kwengqondo, nangona inqanaba lala linokuhluka ngokubanzi ukusuka kumntu ukuya kumntu.
Iingxaki kunye neenkqubo zokugaya ukutya nazo ziqhelekileyo kulabo abane-Down syndrome.
Iintsana ezizalwe nge-Down syndrome zingenayo i-anus ephuhlisiweyo ngokupheleleyo (leyo ingayilungiswa ngokuhlinzwa emva nje kokuzalwa). Amaphesenti ama-5 ukuya kuma-15 ekhulwini alabo abane-Down syndrome banokuthi babe nesimo esaziwa ngokuba yi-Hirschsprung, esenzeka xa intlungu enkulu ingasebenzi kakuhle. Oku kungadinga ukuhlinzwa ukuba kususwe isahlulo somathumbu omkhulu ongasebenzi.
Isifo seCeliac: Esinye isimo se-Genetic
Njenge-Down syndrome, isifo se-celiac sisimo semfuza- ngokuqhelekileyo sithetha, kufuneka ube nantoni ubuncinane "esisifo se-gene" ukuphuhlisa imeko. Nangona kunjalo, kukho nezinye iimeko ezibandakanyekayo, ezinye zazo abaphandi abachazileyo. Akunjalo wonke umntu onokuthiwa "izifo zengqondo zeliliac" ziphefumlelwa ngesifo esiqhekezayo.
Isifo se-Celiac sisimo semimandla , oku kuthetha ukuba kuqukwa ukuhlaselwa kwincandelo lomzimba wakho ngesistim somzimba sakho. Xa unayo i-celiac, ukutya okudliwayo kunye nenye yeentlobo ezintathu ze-gluten-i-barley, okanye i-rye-kubangela ukuba isistim somzimba sakho sihlasele kwaye sonakalise intlungu yakho encinci. Oku kunciphisa amandla akho okufumana izondlo ezibalulekileyo ekudleni. Kwifom yayo enzima kakhulu, isifo se-celiac sinokubangela ukungondleki okukhulu, ukuphazamiseka kwegazi, kunye nomngcipheko omkhulu we-lymphoma.
Abantu abane-Down syndrome banomngcipheko omkhulu kakhulu wezifo ezizimele ngokubanzi, kwaye abaphandi bakholelwa ukuba abantu abangama-16 abantu abane-Down syndrome banesifo se-celiac. Oku kuphakamileyo kakhulu kunezinga elilinganiselwa kuma-1 ekhulwini kummandla jikelele. Iingcali zibanxusa abazali ukuba babe nezingane ezine-Down syndrome ezikhutshwe zizifo ezingenazo izifo zegazi ezingapheliyo phakathi kweminyaka emibini nantathu.
Abo bantwana abanobuchopho baya ku funeka bafumane inkqubo eyaziwa ngokuba yi -endoscopy ukuze oogqirha bakwazi ukujonga ngqo kwaye baqokelele iisampuli zamathambo abo emathumbu. Oku kunokubonakala ngathi kukho into ebalulekileyo, kodwa kuyisisiseko sokufumana isifo se-celiac esicacileyo .
Kwakhona, abaninzi abazali abanabantwana abaye bafumana ingxelo yokugcina i-endoscopy yokuba umntwana wabo uhamba ngomkhumbi ngaphandle kweengxaki, kwaye kwakucasula kubazali kunokuba kubantwana.
Ukufumanisa izifo zeCeliac ngaphaya koMntwana
Nangona umntwana wakho we-Down syndrome ekhupha izifo ezingekho phantsi kwesi sifo njengesifo esincinci, akufanele uvumele ukuba uqaphele. Kwabadala abantu abadala baye batshayelwa i-celiac , kwaye kunokwenzeka ukuphuhlisa imeko nganoma naliphi ixesha. Akuyona imeko yobuntwana nje.
Impawu eyaziwayo kakhulu zezifo ezinqabileyo zibandakanya isifo sohudo, ukukhathala, ukulahleka kwesisindo kunye nokukhulelwa kwegazi . Nangona kunjalo, abaninzi abantu abanalo le "mpawu" ze-classic, kwaye kunoko baneempawu ezingabandakanya ukutyunjwa , intlungu edibeneyo kunye nokulahlekelwa yintlungu . Abantwana abanezifo ezinqabileyo bangakhula kancinci kuneentanga zabo kwaye ekugqibeleni bangaba mfutshane njengabantu abadala.
Iingxaki ezinjenge- attention-loss of disperity disorder and depression nazo zingase zixhaphake kubantu abanezifo ezingapheliyo, kwaye zonke ezi zinto zingenzeka kubantu abane-Down syndrome, ngokunjalo.
Uphononongo olulodwa, olukhokelwa ngamagqirha eBhedlela laseBoston Children, lufumene ukuba iiklinikhi ezizodwa ze-Down syndrome aziphangeli rhoqo iimpawu zesifo se-celiac, ingakumbi xa loo mpawu ayiyona "impawu zeklasi" eziqhelekileyo ezihambelana nale meko. Olu pho nonongo lubhekisele ekubanjeni kunye neengxaki zokuziphatha njengoko iimpawu ezivame ukuvakaliswa ngabakhathaleli babantwana abaye bavavanyelwa izifo ezingenazo.
Kungenzeka ukuba ube nesifo se-celiac ngaphandle kwempawu ebonakalayo , kodwa amaqela amabini abaphandi abongeziweyo afumene ukuba abantu abane-Down syndrome abahlakulela isifo se-celiac baninzi kunokuba bangenayo impawu ebonakalayo, ngakumbi ukukhula okucothayo. Enyanisweni, uphando oluthile lufumene ukuba abantwana abane-Down syndrome abasandul 'ukufumana isifo se-celiac babenokuba kakhulu bephantsi kwe-10 percentile yokuphakama nobukhulu.
Nangona kunjalo, olunye uphando lubonisa ukuba iimpawu eziqhelekileyo-i-anemia, isifo sohudo kunye nokuqhaqha-nazo zihlala zihlala rhoqo kwi-Down syndrome abantwana abangenaye leliac. Kwakhona kunokwenzeka ukuba abo abanesifo se-celiac babe nomsebenzi ophantsi we -roid, ongaphinda ubenzeka ekungabikho kwesifo se-celiac kulabo abane-Down syndrome. Ngako oko, abaphandi bathi, abanonophelo kunye neekliniki kufuneka baqaphele kunye neskrini kwimeko.
Kukho iindaba ezilungileyo: isifundo esivela eSweden sibonise ukuba abantu abane-Down syndrome kunye nezifo ezingama-celiac abanalo mngcipheko wokufa ngaphezu kwabantu abane-Down syndrome bodwa.
Ukunyamekela Umntu Ophethe Izifo Ezibuhlungu
Ngelishwa, akukho okwangoku naluphi na unyango lwamayeza lokuphatha isifo se-celiac. Oku kungatshintsha kwixesha elizayo, kodwa njengamanje, unyango kuphela lwe-celiac isifo esingenanto-gulen , apho umntu onobuqili kufuneka alandele ubomi.
I-gluten-free food sounds sounds easy on paper, kodwa kunokuba nzima ukwenza okokuba ukutya okuninzi kunembewu ye gluten. Xa upheka umntu onesi sifo esibi, kufuneka ufunde iilebula ngokucophelela kwaye ulinde ukungcola kwe-gluten ekhitshini.
Enyanisweni, ezinye iintsapho zenza umkhuba wokutya i-gluten-free ekhaya ukukhusela impilo yelungu ngezifo ezingenazo. Ukutya kwakhona kunokuba ngumngeni, nangona kufikeleleka ngokugqithiswa kwamamenyu e-gluten-free kwiindawo zokutya okukhawuleza kunye nokutya okukhawuleza.
ILizwi
Xa umntwana wakho ene-Down syndrome, ecinga inguqu enkulu njengokuba ukutya okungafani ne-gluten kunokubonakala kunzima, ingakumbi ukuba umntwana wakho unezinye iingxaki zempilo eziqhelekileyo kulabo abane-Down syndrome. Ukukhulisa umntwana we-Down syndrome okanye ukunakekela umntu omdala kunokuba ngumngeni, kwaye ukongeza izithintelo zokutya ezikhethekileyo akunakukunceda.
Kodwa kukho iindaba ezilungileyo: akukho mfuneko yokunciphisa umntwana wakho weekiki, i-pizza, kunye nezinye iintandokazi zabantwana, kuba iinguqu ezinokungabikho kwe-gluten zazo zonke ezi zinto zifumaneka ngokubanzi. Kwakhona, xa ufumene i-curve yokufunda ehambayo kunye neyokutya, uya kufumana ukuba iya kuba yinto yesibini, kwaye ungabona okunye ukugaya komntwana wakho kunye nezinye iimpawu ziphucula, ngokunjalo.
> Imithombo:
> Ludvigsson JF et al. Izifo zeCeliac kunye ne-Down Syndrome Ukufa: Uvavanyo lwesizwe lonke. BMC Pediatrics. 2017 Jan 31; 17 (1): 41.
> I-National Down Syndrome Society. Ishicilelo sekhontrakthi yeThambo kunye ne-Down Syndrome.
> Mårild K et al. I-Down Syndrome idibaniswa neNgcipheko ephakamileyo yeSifo seCeliac: Isifundo soPhando lweSizwe soPhando. Umbhalo wePediatrics. 2013 Jul; 163 (1): 237-42.
> Pavlovic M et al. Ukuhlolwa kwesifo se-Celiac kwi-Down Syndrome - i-Old and Dilemmas. Umbhalo wehlabathi weeNtsholongwane zeTliniki. 2017 Julayi 16; 5 (7): 264-269.
> Sharr C et al. Ukufumanisa izifo zeCeliac kwizigulane ezine-Down Syndrome. I-American Journal ye-Medical Genetics, Icandelo A. 2016 Dec; 170 (12): 3098-3105.