Ngaba umntwana wakho omncinci uhlala evalekile impumlo? Nokuba bamnika ukutya okungakanani na, uyabhitya engakhange aqaphele? Ngaba ngamanye amaxesha uziva ngathi unengxaki yokuphefumla? Kuqhelekile ukuba abazali bazive besoyika xa bebona ezi mpawu. Ezi zisenokuba ziimpawu zesifo esibizwa ngokuba yiCystic Fibrosis (CF), esisenokuba asizange sive kangako ngaso, kodwa kubaluleke kakhulu ukusazi. Masithethe ngale nto ngaphandle koloyiko kwaye namhlanje.
Yintoni kanye kanye i-cystic fibrosis (CF)?
Ngamafutshane, esi sisifo semfuza esifunyanwa ngabazali . Kukho i-gene ekhethekileyo elawula ukuhamba kwetyuwa (i-chloride) kunye nolwelo kwiiseli zomzimba wethu. Oku kubizwa ngokuba yi-CFTR (cystic fibrosis transmembrane conductance regulator) . Ngoko ke, isifo se-CF senzeka xa kukho isiphene okanye utshintsho kwesi gene.
Kwenzeka ntoni ngenxa yesi siphene? Ngokwesiqhelo, iincindi emizimbeni yethu, ezifana ne-mucus kunye ne-pus , zincinci kwaye zityibilika. Kodwa emzimbeni womntu one-CF, ezi zincindi ziba nkulu kakhulu, zityebile, kwaye zinamathela .
Khawucinge ngento eyenzekayo xa le mucus ityebileyo iqokelelana emiphungeni. Kwenza kube nzima ukuphefumla, iintsholongwane zibanjwa lula , kwaye usulelo luba rhoqo . Ekuhambeni kwexesha, oku kunokubangela umonakalo omkhulu emiphungeni, ukusilela kokuphefumla, kwanokufa.
Kwakhona, ezi zinto zinkulu zivala imibhobho yepancreas. Emva koko ii-enzymes zokugaya ukutya ezinceda ekugayeni ukutya esikutyayo azikhutshwa . Ngenxa yoko, ukungondleki kakuhle kunye nokukhula okukhawulezileyo kwenzeka. Ukongeza, izifo zesibindi, isifo seswekile (i-Cystic Fibrosis-Related Diabetes` - CFRD) kunye neengxaki zokuzala nazo zinokwenzeka.
Kodwa ungakhathazeki. Namhlanje, ngenxa yonyango oluphambili, ixesha lokuphila kwezigulane ezine-CF linyuke ngamashumi eminyaka.
Zithini iimpawu zesi sifo?
Iimpawu ze-CF zingahluka kumntu nomntu. Ziyahluka ngokuxhomekeke kubukhali besifo. Makhe sijonge iimpawu eziphambili.
| Inkqubo/ilungu elichaphazelekayo | Iimpawu eziqhelekileyo |
|---|---|
| Inkqubo yokuphefumla (imiphunga) |
|
| Inkqubo yokugaya ukutya | |
| Ezinye iimpawu |
I-cystic fibrosis engaqhelekanga
Olu luhlobo lwe-CF olungenabungozi kangako. Iimpawu zibonakala kamva ebomini. Ngamanye amaxesha lilungu elinye kuphela elichaphazeleka.
Yintoni ebangela i-CF?
Njengoko besitshilo ngaphambili, oku kubangelwa sisiphene kwijini ebizwa ngokuba yiCFTR . Ukuze umntwana abe nesi sifo, kufuneka umntwana afumane ikopi yejini enesiphene kumama nakutata .
Khawucinge ukuba bobabini abazali 'bangabathwali' bale jini inesiphako. Umthwali uthetha ukuba abanazo iimpawu, kodwa banekopi enye yejini enesiphako emzimbeni wabo. Ngalo lonke ixesha abazali ababini abanjalo benomntwana, kukho ithuba elingama-25% (omnye kwabane) lokuba umntwana abe ne-CF.
Ifunyanwa njani le sifo?
Kubaluleke kakhulu ukuxilonga esi sifo kwangethuba, kuba emva koko unyango lunokuqaliswa ngokukhawuleza kwaye iingxaki ezinokubakho kwixesha elizayo zinokuncitshiswa. ESri Lanka, ezinye izibhedlele ngoku zivavanya oku kubantwana xa bezalwa.
Iimvavanyo eziphambili ezisetyenziselwa ukufumanisa isifo zezi:
- Uvavanyo lokubila: Olu lolona vavanyo luthembekileyo lokufumanisa i-CF.Olu vavanyo olungenabuhlungu lulinganisa ubungakanani betyuwa (i-chloride) ekubileni kwakho. Ukuba ubungakanani buphezulu kakhulu kunesiqhelo, luphawu lwe-CF.
- Uvavanyo lwegazi: Olu vavanyo luvavanya inqanaba lekhemikhali ebizwa ngokuba yi-`Immunoreactive Trypsinogen (IRT)` egazini. Eli nqanaba liphezulu kwizigulane ezine-CF.
- Uvavanyo lwemfuza (uvavanyo lwe-DNA): Oku kujonga ngokuthe ngqo iziphene kwi-'CFTR` gene.
Ukongeza kwezi mvavanyo, ugqirha wakho unokucebisa ezinye iimvavanyo ukuqinisekisa ukuxilongwa kunye nokukhangela iingxaki. Umzekelo, uvavanyo lwesifuba, uvavanyo lomsebenzi wamaphaphu (ii-PFT), kunye novavanyo lwesikhohlela kunye nendle.
Zithini iindlela zonyango?
Ngenxa yokuba i-CF sisifo esintsonkothileyo, unyango lunikezelwa liqela leengcali ezahlukeneyo, kuquka ingcali yemiphunga, ingcali ye-physiotherapist, kunye nengcali yesondlo. Iinjongo eziphambili zonyango kukucoca imiphunga, ukuthintela usulelo, kunye nokubonelela ngesondlo esifunekayo.
Amayeza
Ugqirha wakho angakunika amayeza anjengala:
- Ii-antibiotics: Ukuthintela nokunyanga izifo zemiphunga.
- Amayeza okunciphisa i-mucus: La anikwa nge-inhaler okanye i-nebulizer. Anceda ekunciphiseni i-mucus etyebileyo kwaye kube lula ukukhwehlela.
- Iibronchodilators: Ziyandisa indlela yomoya kwaye zenze kube lula ukuphefumla.
- Izongezo ze-enzyme zePancreatic: Ezi zifanele zithathwe ngexesha lokutya kunye nokutya okulula. Zinceda ekugayweni nasekufunxeni izondlo.
- Iimodulators ze-CFTR: Ezi zezona ntlobo zamachiza zintsha nezisebenzayo. La mayeza anceda ukubuyisela umsebenzi weproteni ye-'CFTR' enesiphene ebangela ngokuthe ngqo esi sifo. Oku kunokwenza umhluzi ube mncinci, kuphucule ukusebenza kwemiphunga, kunciphise ukukhwehlela, kwaye kunciphise nobunzima. `(Trikafta, Kalydeco, Orkambi)` zezinye zezi ntlobo zamayeza.
Iindlela zokuSusa iiNdlela zoMoya (ACT)
Ezi zizinto ekufuneka zenziwe imihla ngemihla, ubuncinane kabini ngemini. Zinceda ekukhululeni nasekususeni ulwelo oluxineneyo olubambeke emiphungeni.
- Unyango lomzimba esifubeni: Ukuba nomntu ocofa umqolo nesifuba ngesingqi ukuze akhulule ulwelo.
- Ivesti: Le yivesti eqhagamshelwe kumatshini okhethekileyo. Xa inxityiwe, ukungcangcazela okuphezulu kubetha esifubeni, okubangela ukuba kwenzeke isenzo kwaye kukhululeke ulwelo.
- Izixhobo ze-PEP: Ukuphefumla ngokusebenzisa izixhobo ezincinci ezifana ne-`(Flutter, Acapella)` kudala uxinzelelo emiphungeni kwaye kunceda ukususa i-mucus.
Utyando
Ezinye iingxaki zisenokufuna utyando.
- Ukufakelwa imiphunga: Indlela yokugqibela xa isifo sinzima kakhulu kwaye imiphunga ingasebenzi kakuhle.
- Ukufakelwa kwesibindi: Ukuba isibindi sonakele kakhulu.
- Okunye: Izinto ezifana nokususa ii-polyps zeempumlo, ukufaka ityhubhu yokondla esiswini ukuze kufumaneke ukutya.
Iingxaki ezinokubakho ze-CF
Ukuba i-CF ayinyangwa kakuhle, iingxaki ezahlukeneyo zinokubakho.
- Imiphunga: Ukwandiswa okungapheliyo kweendlela zomoya (`Bronchiectasis`), ukuwa kwemiphunga (`Pneumothorax`), usulelo olungapheliyo.
- I-Pancreatitis: Isifo seswekile esinxulumene ne-CF (`CFRD`).
- Isibindi: Ukuvaleka kwesibindi (i-Cirrhosis).
- Amathumbu: Ukuvaleka kwamathumbu, umngcipheko ophezulu womhlaza wamathumbu amakhulu.
- Inkqubo yokuzala: Ukungazali kwamadoda kunye nokuzala okulibazisekileyo kwabasetyhini.
- Amathambo: Ukuncitshiswa kwamathambo (i-Osteoporosis).
Imibuzo Ebuzwa Rhoqo (Ii-FAQ)
Ingakanani iminyaka yobomi bomntu one-CF?
Imeko yanamhlanje yahlukile kakhulu kwixesha elidlulileyo. Unyango lwanamhlanje, ngakumbi 'ii-CFTR modulators', luphucule kakhulu ixesha lokuphila kunye nomgangatho wobomi bezigulane ezine-CF. Ezinye izifundo zibonisa ukuba umntwana ozelwe namhlanje unokuphila iminyaka engama-60-70 nangaphezulu.
Ngaba abantu abane-CF bangaphila ubomi obuqhelekileyo?
Ewe. Nangona kukho imingeni yonyango lwemihla ngemihla nokulandela iingcebiso zonyango, abantu abaninzi baphila ubomi obuqhelekileyo. Baya esikolweni, bayasebenza, bayatshata, kwaye baneentsapho.
Kuza kwenzeka ntoni ukuba ayinyangwa?
Ukuba ayinyangwa, inokukhokelela kwiintsholongwane zemiphunga eziphindaphindayo, ubunzima obukhulu bokuphefumla, ukungondleki kakuhle, ukuvaleka kwamathumbu, kwaye ekugqibeleni kufe. Ke ngoko, unyango lubalulekile .
Umyalezo Wokuya Ekhaya
- I-Cystic Fibrosis (CF) sisifo esiyingozi, kodwa esilawulekayo kwimfuza.
- Kubaluleke kakhulu ukufumanisa isifo kwangethuba nokuqhubeka nonyango imihla ngemihla .
- Ukuba umntwana wakho uneempawu ezifana nokuxinana kwesifuba rhoqo, ukungakwazi ukutyeba, okanye ukubila okunetyuwa eninzi, bonana nogqirha ngoko nangoko.
- Ngenxa yamayeza namayeza anamhlanje, ubomi nekamva lezigulane ezine-CF ziphucuke kakhulu namhlanje.
- Hlala unxibelelana neqela lakho lezonyango kwaye ulandele imiyalelo yalo ngokuchanekileyo.
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