Indaba ye-Zoe yokuphila neCystic Fibrosis

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Hlangana neZoe

U-Zoe Ose uyintombazana encinci ekhangelekayo enommothekayo omnandi, amehlo amahle, avukekileyo, avuyo, kunye nokungabi namsulwa kwengane eqala ukufumana isimangaliso sehlabathi elikujikelezile. U-Zoe uyintombazana encinci ehlala ne- cystic fibrosis (CF) , isifo esibandakanya ubuncinane buntwaneni obungenasiphako kwaye esongela ukumbamba ubomi obuthandayo.

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Ibali leZoe

Abazali bakaZoe, uScott noJada Ose, kuqala baqala ukukrokra into ethile yayingalunganga ngo-Zoe xa engazange abuyele ubunzima bokuzalwa kwakhe kwiiveki zokuqala ezimbini zobomi. U-Zoe ekugqibeleni wafikelela kwisisindo sakhe sokuzala xa wayeneminyaka engama-2 ubudala, kodwa uScott noJada babesazi ukuba into ephosakeleyo. Njalo xa uZoe edla, isisu sakhe sasiba nzima kwaye sasiqhaqhazela, kwaye wayedabulisa intlungu kwaze kwaba yinto efana nayo yonke into ayeyidlile yayiza kuphinda ibuyele kwi-diaper yayo.

Ngexesha leenyanga ezili-10 zokuqala zobomi, uScott noJada bavakatyelela kwi-ofisi yezingane ukuba baxoxe ngeengxaki zabo. Xa udokotela wezingane wayengenayo impendulo yezimpawu zika-Zoe, uScott noJada bazenzela uphando kwaye baqala ukukrokra ukuba i-Zoe inokuba ne-cystic fibrosis. Udokotela wezingane abazange baphendule kwiinkxalabo zabo, ngoko uScott noJada bathatha iZoe kwisibhedlele sezingane ngolona sibini. Ngethuba apho, ngosuku lokuqala ngaphambi kokuba uZoe aphendule 1, izikhalazo zabo zaqinisekiswa. U-Zoe wayenayo i-cystic fibrosis.

U-Zoe waqala ukufumana unyango kwi-CF Care Centre. Ngoku, eneminyaka emine ubudala, uye wakhula waba yindoda engama-80 e-percentile kuma-charts okukhula. Ubomi akulula, kwaye uhlala elwa neengxaki kwixesha elide, kodwa ngokusebenza kanzima, i-Zoe ikhula kwaye yenza kakuhle.

Emva kokuba u-Zoe afunyanwe , ezinye iisisixhenxe zezingane zavavanywa. Ababini babantwana, abangabantwana bakaJada kunye nabantwana bakaScott, kunye ne-cystic fibrosis. Unomngcipheko onzima kunokuba u-Zoe, kwaye ngethamsanqa, unemiqondiso embalwa yesifo.

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Ixesha lexesha leZoe

Xa wayefumaniswe okokuqala, u-Zoe wayenombhobho yokutya empumeni yakhe eyayisetyenziselwa ukondla i-calorie ephezulu ephezulu kwisisu sakhe kwaye uncede akhule ngokukhawuleza. UScott noJada bayakhumbula ukuba babedla ngokulala kwiinyanga ezintathu u-Zoe wayenayo i-tubes feedings - ekubeni unobungozi bokuthi ibhubhu ingaphuma okanye idibanise ngo-Zoe njengoko elele. Bahlala kufuphi naye ubusuku bonke ukuqinisekisa ukuba iZoe yafumana yonke into exabisekileyo yesondlo ayifunayo.

Ngoku uSoe udla ukutya kwetafile rhoqo kodwa kufuneka adle ubuninzi beekhalori eziphezulu, ukutya okunamafutha aphezulu. UScott noJada bathi oku kunzima ukufezekisa xa usebenzisana nomdla oneminyaka emine ubudala. Njengabantu abaninzi abane-cystic fibrosis, i-Zoe iphinda ithathe i- enzymes nanini na idla.

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Usuku oluqhelekileyo lweZoe kunye neNtsapho yakhe

I-Zoe ithatha i- bronchodilators kunye neminye imichiza echazwe kulabo abaneCF. U-Zoe no-Jada kufuneka bathathe ixesha lokuthatha imishanguzo yokunyanga kunye nokunyangwa kwamagatya okuhamba ngeenqwelo zomoya rhoqo ngamaxesha ngamaxesha. Ngamanye amaxesha u-Zoe usebenzisa i-vest compression vest ye-airway imvume, kwaye ngamanye amaxesha iScott okanye i-Jada yenza i- physiotherapy ye-chest manual. Xa uJada enganikeli unyango kuZoe, uxakeke ekunakekeleni abazalwana noodadewabo bakaZoe kunye nabantwana basekhaya.

UScott uchitha ixesha elide endleleni, njengoko eqhuba malunga neekhilomitha ezili-150 ukuya kusebenza ngemini kwaye emva kweekhilomitha ezili-150 abuyele ekhaya aze abe no-Zoe, uJada kunye nentsapho ye-Ose. UScott kufuneka enze le nto kuba umqeshi wakhe (e-Savannah) unikeza inshorensi yezempilo ye-Zoe. Intsapho kufuneka iphile eJacsonville, nokuba kunjalo, ukuba ibe kufuphi neziko leCF, apho uSoe kufuneka ahambe khona ngononophelo lwempilo.

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Iseluleko sikaScott noJada

Ngamava abo kunye nokubona amava abanye, uScott noJada baye bafunda okuninzi malunga nomzali onomntwana one-cystic fibrosis. Banikeza amagama alandelayo obulumko kubanye abazali kwiimeko zabo:

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Yiba nokunyamekela ekulandeleni iSicwangciso soTyango

UScott uthi, "Into ebaluleke kakhulu nayiphi na umzali onokuyenza kukuba aqeqeshelwe ngokwaneleyo ukuba ahlale kwimijimi ethile yemihla ngemihla. Oku kuyimfuneko! Umntwana onomdla weCF kufuneka ahlale enempilo ngangokunokwenzeka. Ngaloo nto, ndiyithetha yonke into abayidingayo: i-enzyme zabo, iingcamango zabo, unyango lwabo lokuphefumula kunye ne-physiotherapy yabo esifubeni (CPT). "

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Rekhoda yonke into, yonke imihla

Fumana i-notebook okanye enye inkqubo yokugcina iirekhodi zemihla ngemihla ebalulekileyo. UScott noJada baqaphele ixesha, inani kunye negama lazo zonke iyeza kunye nonyango lokukhutshwa kwe-airway eyenziwa nguZoe ngalunye usuku. Bakubhala kwakhona ukutya adlayo, iimvumi ezinikezwayo kunye neenkcukacha zobungakanani, umbala, ukuhambelana, kunye nokuphindaphinda kwezihlalo zakhe. Bhalisa naziphi na iimpawu ezingekho ziqhelekileyo kwi-Zoe, kwaye zizisa zonke ezi nkcukacha xa zibona iqela leCF. UScott noJada bathi ezi rekhodi zinika ingqiqo ebalulekileyo ekuncedeni ukuba kubangelwe imbangela yeengxaki xa zivela.

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Khumbula Ukunyamekela Njengomntwana Wakho

Kumele uhlale uzinzile ngokwaneleyo ukujamelana nokunyameka kwengqondo, kwengqondo kunye neyezimali zokunyamekela umntwana ogulayo. Uya kufuneka kwakhona uhlale unamandla okwaneleyo ukuhlangabezana neemfuno zabantwana bakho abanobuchule.

UScott noJada banentsapho enkulu, ngoko kufuneka bafumane ubuchule, bafumane iindlela zokulinganisela ixesha labo phakathi kwentlanganiso yeZoe kunye neemfuno zabantwana bonke. Bacebisa abazali ukuba bahlanganyele neqela lokuxhasa okanye inethiwekhi kunye nabanye abazali babantwana abaneCF.

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Musa Ukwesaba Ukubuza Ababoneleli NgezeMpilo

UScott noJada bagxininisa ukuba, ngelixa kulungile ukuthembela oogqirha bakho kunye nabahlengikazi, kubalulekile ukuba ukhumbule ukuba bangalunganga okanye benze iimpazamo. Gcina iliso elilindileyo, kwaye ukuba kukho into engabonakali kakuhle kuwe, khankanya. Uyazi indlela yakho yomntwana engcono kunomntu.

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Ummeli woPhando lweCystic Fibrosis

UScott noJada bakholelwa ukuba ukwandiswa kolwazi nokuxhasa ucwaningo lweCF yizona zinto zibaluleke kakhulu abanokuzenza njengabazali ukunceda intombi yabo ibe nekamva. Baye bahlala bekhuthele kakhulu ekukhuthazeni iimfuno zalabo abaneCF kwindlu yowiso-mthetho, bethetha ibali labo ukunyusa ukuqwashiswa koluntu kunye nokuxhasa iSiseko seCystic Fibrosis ngokuthatha inxaxheba kwimicimbi yeengxowa-mali kunye nemikhankaso.