Ikhula njani iPrader Willi Syndrome kuBantwana

IPrader Willi syndrome ebantwaneni

Namhlanje kubhiyozelwa umhla we-30 kuCanzibe UPrader Willi Syndrome uSuku lwaMazwe ngaMazwe. Injongo yayo kukukhumbula olu suku kubo bonke abo banesifo esinqabileyo kwaye saxelwa kwangaphambili ngo-1956 ngoogqirha abakhethekileyo.

Esi sifo sibangelwa sisifo semfuza esibangelwa sisifo se- ingxaki eyenzeka kwi-chromosome 15. Iimpawu zayo ziyavela okoko abantwana beziintsana, baneempawu zethoni yemisipha engalunganga kunye nokulila okubuthathaka. Zininzi ezinye iimpawu kwaye nabantwana abadala kuneminyaka emi-2 baqala ukubonisa ezinye ezikumgangatho ophezulu.

Ukhula njani uPrader uWilli kwiintsana

Esi sifo sele siqala ukubonisa iimpawu zaso zokuqala kubantwana abancinci, phantse kwasekuzalweni. Iintsana zinethoni yemisipha engalunganga, kuya kuqatshelwa emadolweni nakwiingqiniba apho baya kuphumla khona ngokungathi abanamandla. Xa bephendula bane amandla okuphendula kancinci, ngokungathi wayediniwe kakhulu. Nkqu ukukhala komntwana kubuthathaka kakhulu.

Ngenxa yokuthamba kwemisipha yabo, abantwana bane Ukutsala okungalunganga, ke ukutsala okucothayo okanye okubuthathaka kunokubangela ukunqongophala kokondla kunye nokusilela kuphuhliso lwayo. Iimpawu zobuso zibaluleke kakhulu: amehlo amile okwe-amangile, umlomo uthambekele ezantsi, umlomo ongaphezulu ubhityile kakhulu, kwaye iitempile zincinci entloko. Omabini amakhwenkwe namantombazana akwizitho zokuzala akaphucukanga. Ubudoda bamadoda kunye namasende, kunye ne-clitoris yamantombazana kunye neelabhayi zincinci kuneziqhelekileyo.

IPrader Willi syndrome ebantwaneni

Ifoto ethathwe kwiYucatan

UPrader uWilli ukhula njani kubantwana ukusuka kwiminyaka emi-2 ukuya kwemi-3

Nangona iimpawu zabo zivela xa beziintsana, banokuhlala ngalo lonke ixesha lobuntwana bakho kunye nenkqubela phambili ebomini bakho bonke. Abantwana abaneminyaka emibini baqala ukuba nomnqweno ogqithileyo wokutya, bafike inzuzo enkulu ngokukhawuleza.

Uphuhliso nokukhula kwayo kusilela. Banesiqu esifutshane, izihlunu ezincinci, kunye namafutha omzimba aphezulu. Zonke zifunyenwe iingxaki ze-endocrine okanye ukusilela kwehomoni, kubandakanya i-hypothyroidism, apho umzimba ungaphenduli ngokwaneleyo kwiimeko zoxinzelelo okanye usulelo.

Banengxaki yokuthetha, okoko ukuvela kwayo kulibazisekile. Okwangoku iingxaki zokuziphatha ngokweemvakalelo kwaye ilawulwe kancinci. Banokuba nokuziphatha okunyanzelekileyo, ukuba nomsindo, ukungaluthandi utshintsho kwinkqubo yesiqhelo, kwaye bathambekele ekubeni ukuphazamiseka kwempilo yengqondo.

Phakathi kwenkangeleko yabo ebonakalayo zincinci kakhulu izandla okanye iinyawo scoliosis okanye ukugobeka okungaqhelekanga komqolo, iingxaki zomqolo, iingxaki zombono, ulusu olumhlophe kunye amalungu esini angaphucukangas. Nokuba abasetyhini abanakuze baye exesheni, kwaye amadoda anokukhulisa ukulibaziseka kokufikisa, nokuba kungabikho.

IPrader Willi syndrome ebantwaneni

Unyango lwePrader Willi Syndrome

Ukufunyanwa kwesi sifo kunqabile isekwe kuvavanyo lweemolekyuli, ukubanakho ukuxilongwa kwangoko ukuze ukulandelelwa okanye unyango lwenziwe ngaphakathi kwento enokusetyenziswa. I-Prader Willi syndrome ayinyangi kwaye kufuneka ukhokele uthotho lweepateni ukuze umntu akhokele umgangatho wobomi obungcono. Phakathi kweengcebiso zakhe kukunxiba Ukubeka iliso rhoqo ekulawuleni ubunzima kunye nokukhuluphala. Ukuhanjiswa kwecalcium kunye novithamini D kunye nolawulo lonyango lwehomoni.

Kuya kufuneka ukwenza uthotho lweendlela, imigaqo, Imilinganiselo kunye nemida eya kuthi ibuyiswe ngemivuzo elungileyo engahambelaniyo nokutya. Nangona kunjalo, inkxaso yengqondo kunye nengqondo iya kuhlala ikhona kubo iingxaki ngokuzilawula ngokwakho, Uxinzelelo kunye nokuzithemba okuphantsi.

Abantu abaphethwe yiyo kwaye ngakumbi abantwana kufuneka zilandelele kwaye zixhase ngumntu omdala, kuba ukhuseleko kunye nentembeko yentlalontle yomntwana kunye noluntu iyimfuneko. Unokufunda elinye lamanqaku ethu apho sinikezela ngohlobo lwe khuthaza ukubandakanywa kwabantwana abahlupheka ngenxa yokutyeba kakhulu ebuntwaneni.


Umxholo wenqaku uyabambelela kwimigaqo yethu imigaqo yokuziphatha yokuhlela. Ukuxela impazamo cofa apha.

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