Iingcebiso zokuphila neCystic Fibrosis

Indlela Yokuphila Ubomi Obuninzi NgeCF

Kwiminyaka emashumi edlulileyo, i-cystic fibrosis (iCF) yayicingelwa njengesivakalisi sokufa. Ukuphila kunye neCF kwakuthetha ukuchitha ixesha elininzi lokuphefumula nokuzama ukuphepha ukubandezeleka kwaze kwaba yilapho usweleka ekufeni kwangasese ebusaneni. Ngethamsanqa, oku akusona kunjalo. Namhlanje, abantu abane-cystic fibrosis bahlala ixesha elide kunanini ngaphambili, ngokuqhelekileyo babe phakathi-abadala.

Isizukulwana sanamhlanje sifumanisa ukuba ukuhlala neCF kuthetha ukufunda ukujamelana, ukuxhomekeka ekuthembekeni, nokufumana entsha evamile.

Ukufunda Indlela yokujongana ne-CF Diagnosis

Ukuxilongwa kwe-CF kunzima kakhulu kwaye yonke intsapho iphendulela ngokuhlukileyo. Ukufunda ukuba umntwana wakho unesifo esichengelayo sisifo esinobuchoko. Emva kokutshatyalaliswa kokuqala, ungaqala ukwakha ibhokisi lakho leethuluzi leendlela zokubhekana nokukhusela i-CF ukunyamekela umntwana wakho.

Nazi izinto ezine nganye ibhokisi yeebenzi yeCF kufuneka ifake.

Ulwazi. Buza, jonga, ufunde, ufunde yonke into malunga neCF ungafumana izandla zakho. Kukho into eninzi yokufunda, ngoko kuyimvelo ukuba uya kuba nemibuzo eninzi endleleni. Thatha umqaphela! Ungathembeli kwimemori yakho, iya kuphumelela ngexesha lokuxinzezeleka. Bhala phantsi nayiphi na imibuzo enokuyenza kwi-notebook ephakamileyo. Gcina incwadana yakho kunye nawe ngamaxesha onke kwaye ulungele ukubhala amanqaku akho rhoqo xa ubona oogqirha bakho.

Inkxaso. Zibandakanye namaqela enkxaso. Qhagamshelana nezinye izigulane zeCF kunye neentsapho zabo. Akukho mntu uyazi into ohamba ngayo njengomntu oye wahlala phantsi ngendlela efanayo. Zizenzele nabantu abanokukukhokela njengoko udala indlela yakho.

Isicwangciso. Ukuphila ubomi bemihla ngemihla kunye neCF kunokumangalisa.

Yayazi zonke iinkatho, unyango, kunye neendlela oza kulufuna ukulawula imeko yomntwana wakho. Yenza isicwangciso esilungelelanisa yonke le mi sebenzi - amayeza, unyango, ezinye iindlela zokwelapha - kwindlela yakho yemihla ngemihla.

Amandla. Unokuva ezininzi zezinto ezidikibalalayo ezisuka kwintetho-ntle kodwa abantu abangachazwanga. Khumbula ukuba i-cystic fibrosis isetyenziselwa ukuba izinto ezininzi ezingekho. Nangona kunjalo, abanye bangakwazi ukuba oku. Unokufundisa abanye malunga neCF, kodwa ukuba ukhetha ukungahambi kakuhle. Lindela ukuhlangabezana nokungahambi kakuhle, kodwa ungakuvumeli ukuba ufumane okusemandleni akho. Zama ulandele ingxolo yengemva uze uphulaphule abo banamava amaninzi kwi-CF, njengabanikezeli benkonzo yabantwana bezempilo.

Ukucwangcisa Ubomi obupheleleyo ngeCF

Ngoku ukuba uye waqulunqa isicwangciso sokujongana neCF ukuxilongwa, isinyathelo esilandelayo kukuqala ukucwangcisa ikusasa elikhawulezileyo nexesha elide. Abantwana abaneCF bangaceba ukuphila njengabantu abadala kuba sifunde iindlela ezingcono zokuphatha iCF. Ukuthintela umonakalo ukususela kumncinci kwindlela kuphela yokunika abantwana abaneCF ithuba lokuba ngabantu abadala. Lo xanduva olukhulu kubazali kwaye luquka umnikelo othile.

Nazi iindlela ezintathu zokuqinisekisa ukuba umntwana wakho unako ikamva elihle kakhulu.

1. Misela inkqubo. Uhlobo lwe-CF ludla lufuna ukuthatha amayeza ngaphambi kokutya ngalunye, ukunika amayeza amaxesha ambalwa ngosuku, kunye nokunyanga amayeza amaxesha amane ngosuku. Ukufakela ezi zinto ebomini bakho kungaba ngumngeni. Nangona kunjalo, ukulungelelana kukubalulekileyo kwimpumelelo. Ukucwangcisa konke okufuneka ukwenze kunokunceda ukugcina ixesha kunye nokunciphisa umthwalo.
2. Yiba nekhono. Xa unesiqhelo, zama kwaye unamathele kuso. Xa izinto ziba nzima, unokulingwa ukuba unqabile unyango okanye uphinde uthumele unyango. Musa ukwenza! Ukungaphumeleli kwinqanaba elilodwa lomsebenzi wonyango lunokubangela ukukhutshwa okukhulu. Ukunamathela kwisiqhelo kuya kukunceda uhlale kwikhosi kwaye ufundise umntwana wakho imikhwa emihle ngekamva.

1. Funda ukufunda. Abazali abaninzi banabantwana abaneCF bafumanisa ukuba badla ngokugqithiseleyo iimfuno zabo zabantwana abazilibalayo ukuba banakekele. Musa ukuvumela ukuba oku kwenzeke okanye uya kuphuma ngokukhawuleza. I-CF izimisele ukuhlala. Akuyi kuhamba. Uzakufuna iindlela zokwenza inxalenye yobomi bakho ngaphandle kokuvumela ukuba kube ngumphefumlo wakho wonke.

Ukufunda ukuhlala kunye neCF kunokuxininisa kubo bonke abathintekayo, kodwa ngokusoloko beyikrakra ngenxa yabantwana abantwaba abanokuba bancinci ukuqonda oko kuphila ngeCF. Abazalwana abakhulileyo banokwesaba ukuba umzalwana wabo okanye udade wabo uya kufa, abe nomona ngabo bonke abazalwana babo abagulayo abafumanayo, okanye bazive benetyala lokuba baphilile kwaye umzalwana okanye udade wabo akayi. Kubalulekile ukubandakanya abantakwabo kwi-equation, ukuqinisekisa ukuba abalahlekanga kwi-shuffle.

Ukufumanisa uhlobo olutsha oluqhelekileyo

Ubomi butshintsho emva koxilongo lweCF. Nangemva kokuba umntwana wakho sele ekhulile, iCF iya kudlala indima enkulu ebomini bakho. Umntwana wakho unokufuna uncedo ngoncedo lwangokwenyama njengoko ekhula. Ngaphezulu, uya kusadingeka uqwalasele ishedyuli yonyango xa uhlela iziganeko zentsapho.

Ngeempawu ezimbalwa apha naphaya, umntwana wakho unokuphila ubomi obuqhelekileyo . Abantu abane-CF bangaya esikolweni, babe nabahlobo, badlale imidlalo, batshatile babe nabantwana, kwaye banokuba nemisebenzi ephumelelayo.

Unokuphupha enkulu nangona wena, okanye umntwana wakho, uneCF. Beka iinjongo zexesha elifutshane ukukunceda ufeze isicwangciso sakho sokuphila, kodwa uguquke. Unokufuna ukwenza ezinye iinguqulelo endleleni.

_{Umthombo:
Umchweli, DR, & Narsavage, GL (2004). Omnye umoya ngexesha: Ukuphila ne-cystic fibrosis. Umbhalo woNyango lweZonyango. 19, 25-32.}

_{Havermans, T. & De Boek, K. (2007). I-Cystic fibrosis: Isenzo sokulinganisa? Umbhalo weCystic Fibrosis. 6, 161-162.}