Kuyini i-Cystic Fibrosis? Masiyiqonde kalula!

Cishe uke wezwa ukuthi abanye abantu bazalwa benesifo sofuzo, akunjalo? I-Cystic Fibrosis (CF) yisifo sofuzo. Abantu abaningi bacabanga ukuthi lesi yisifo esithinta amaphaphu kuphela, ngoba ubunzima bokuphefumula kanye nokutheleleka kwamaphaphu okuvamile kuvamile kulesi sifo. Kodwa empeleni indaba iyinkimbinkimbi kakhulu kunalokho. Ake sibheke ukuthi iyini.

Iyini ngempela i-cystic fibrosis (CF)?

Kalula nje, i-cystic fibrosis (CF) yisimo sezakhi zofuzo esibangela ukwakheka kwenqwaba enkulu ye-mucus ejiyile, enamathelayo ngaphakathi kwezitho ezithile emizimbeni yethu. Le mucus ejiyile ingalimaza lezo zitho futhi iphazamise ukusebenza kwazo.

Ngokuvamile, i-mucus emaphashini nasemakhaleni ethu igeleza kancane futhi incane. Igcina lezo zindawo zimanzi futhi ibamba ukungcola kanye nemfucumfucu. Kodwa kubantu abane-CF, ukuguquka kwezakhi zofuzo kushintsha indlela ekhiqizwa ngayo le mucus. Iphrotheni ebangela lokhu ayikho noma ayisebenzi kahle. Ngenxa yalokho, usawoti oncipha i-mucus ubhajwa ngaphakathi kwamaseli, okwenza i-mucus ibe nkulu futhi inamathele.

Nakuba abantu abaningi becabanga ukuthi yisifo samaphaphu, i-CF ithola igama layo ngoba ibangela ama-cysts kanye nezibazi (i-fibrosis) kuma-pancreas. Lo monakalo, kanye nokuqina kolwelwesi, kungavimba imigudu ekhipha ama-enzyme okugaya ukudla asiza ekugayeni ukudla esikudlayo. Lokhu kungavimbela umzimba ekumunceni izakhamzimba ekudleni ngendlela efanele. Ngaphezu kwamaphaphu kanye nama-pancreas, kungathinta nesibindi, ama-sinuses, amathumbu, kanye nezitho zobulili.

I-CF yisimo sofuzo umuntu azalwa naso. Lokhu kusho ukuthi yisimo sokuphila konke esingaba sibi ngokuhamba kwesikhathi. Abantu abane-CF bangase babe nesikhathi esifushane sokuphila kunabantu abangenayo i-CF.

Ingabe zikhona izinhlobo eziyinhloko ze-cystic fibrosis (CF)?

Yebo, izinhlobo ezimbili eziyinhloko ze-`CF` zingabonakala:

1. I-cystic fibrosis ejwayelekile: Lokhu kuvame ukuthinta izitho eziningi emzimbeni. Lesi simo sivame ukutholakala eminyakeni embalwa yokuqala yokuphila.

2. I-cystic fibrosis engavamile: Lolu uhlobo lwe-CF olungelubi kakhulu futhi oluthambile. Lungathinta isitho esisodwa kuphela, noma izimpawu zingase zivele zidlule. Ngokuvamile lutholakala ezinganeni ezindala noma kubantu abadala abasebasha.

Ziyini izimpawu ze-cystic fibrosis (CF)?

Umuntu one-CF angase abe nezimpawu ezifana nalezi:

• Ukutheleleka kwamaphaphu okuvamile (isb., i-pneumonia ephindaphindayo noma i-bronchitis)). Cabanga nje, ezinye izingane ezincane zihlala zinekhala eligobhozayo, ukukhwehlela, nomsindo wokuphefumula esifubeni sazo, futhi ngisho nangemithi, ziyaqhubeka zibuya ngokuphindaphindiwe ngaphandle kokukhululeka. Kunjalo-ke.
• Ukuchitha indle ekhululekile noma enamafutha.
• Ubunzima bokuphefumula.
• Ukukhala komoya kuyinto evamile, umsindo wokukhenceza ovela esifubeni.
• Ukutheleleka okuvamile kwama-sinus.
• Ukukhwehlela okuqhubekayo.
• Ukukhula kuhamba kancane.
• Ukwehluleka ukuchuma, noma udla kahle futhi uthola amakhalori adingwa ngumzimba wakho, kuyisimo lapho ungakhuluphali khona noma ube mncane.

Izimpawu ze-cystic fibrosis engavamile (i-CF engavamile)

Abantu abane-CF engajwayelekile bangase babe nezinye zezimpawu ezishiwo ngenhla. Ngokuhamba kwesikhathi, bangase babhekane nezinto ezifana nalezi:

• I-sinusitis engapheli.
• Ama-polyp ekhala.
• Amazinga angavamile e-electrolyte emzimbeni angabangela ukuphelelwa amanzi emzimbeni noma ukushisa.
• Uhudo.
• I-Pancreatitis.
• Ukwehlisa isisindo ngokungahlosile.

Yini ebangela i-cystic fibrosis (CF)?

Imbangela eyinhloko ye-CF ukuguqulwa kwezakhi zofuzo (ukuguquguquka noma ukuguqulwa kwezakhi zofuzo) ku-gene ebizwa ngokuthi i-CFTR. I-gene ye-CFTR yenza iphrotheni esebenza njengesiteshi se-ion ebusweni bamaseli. Cabanga ngalezi ziteshi ze-ion njengamasango amancane kulwelwesi lweseli. La masango avumela izinhlayiya ezithile ukuba zidlule.

Iphrotheni ekhiqizwa yi-gene ye-`CFTR` ivame ukusebenza njengesango lama -ion e-chloride (uhlobo losawoti olune-charge kagesi engalungile). Lapho ama-ion e-chloride ephuma esitokisini, amanzi nawo ayadonswa. Lokhu kwenzeka lapho i-mucus iba mncane futhi ishelele. Kodwa kubantu abane-`CF`, le nqubo ayenzeki kahle ngenxa yokuguquka kwezakhi zofuzo ze-`CFTR`. Ama-ion e-chloride abe esebhajwa ngaphakathi kwamaseli, eshiya i-mucus iqinile futhi inamathela.

Kunezinhlobo ezahlukene zokuguqulwa kwezakhi zofuzo ze-CFTR (amakilasi I kuya ku-VI). Ezinye izinguquko azikhiqizi iphrotheni, ezinye zikhiqiza inani elincane lephrotheni, kanti ezinye azikhiqizi iphrotheni eziyikhiqizayo.

Ingabe i-cystic fibrosis (CF) yinto ezuzwa njengefa?

Yebo, i-'CF' yisimo sofuzo esizuzwa kusukela ekuzalweni. Umuntu one-'CF' uzuza amakhophi amabili alesi sakhi sofuzo se-'CFTR' esiguquliwe – esisodwa sivela kumama kanti esinye sivela kubaba (lokhu kubizwa ngokuthi ifa le -'autosomal recessive' ).

Abazali bakho akudingeki babe ne-CF ukuze ube ne-CF. Eqinisweni, imindeni eminingi ayinawo umlando womndeni we-CF. Umuntu onekhophi eyodwa kuphela ye-gene eguquliwe ubizwa ngokuthi umthwali . Abathwali ababonisi izimpawu ze-CF.

Ingabe abantu abadala bangaba ne-cystic fibrosis (CF)?

Cha, uzalwa une-gene mutation ebangela i-CF. Kodwa-ke, uma izimpawu zincane kakhulu, noma zifika zidlule, abanye abantu bangase bangatholakali kuze kube yilapho sebekhulile, mhlawumbe baze bafinyelele ebudaleni.

Yiziphi izinkinga ezingaba khona ngenxa ye-CF?

I-CF ingabangela izinkinga ezifana nalezi:

• Ukutheleleka: Ulwelwesi olujiyile lubamba amabhaktheriya emaphashini akho nasemigudwini yomoya, okwenza kube nzima ukuthi aphume. Lokhu kungaholela ekuthelelekeni okuvamile.
• Ukungabikho kwe-vas deferens yokuzalwa (CBAVD): Kulesi simo, amadoda awanawo ama-vas deferens, ipayipi elithwala isidoda. Ngakho-ke, adinga usizo ngokwelashwa kokuzala uma efuna ukuba nezingane.
• Isifo Sikashukela: Isifo sikashukela esihlobene ne-cystic fibrosis singabangelwa ukulimala kwe-pancreas.
• Ukungondleki kahle: Ukuntuleka kwe-mucus ejiyile ohlelweni lokugaya ukudla kanye nama-enzyme e-pancreatic asiza ekugayeni ukudla kwandisa ingozi yokungondleki kahle.
• I-Osteopenia kanye ne-Osteoporosis: Izifo ezibuthakathaka ngamathambo zingavela ngenxa yokungakwazi ukumunca kahle izakhamzimba ohlelweni lokugaya ukudla.
• Izinkinga zokukhulelwa: I-CF ingathinta uhlelo lokugaya ukudla futhi ibangele ukungondleki kahle. Lokhu kwandisa ingozi yezinkinga zokukhulelwa. Ukubeletha ngaphambi kwesikhathi kuyinkinga evame kakhulu.

I-cystic fibrosis (CF) ihlolwa kanjani?

Odokotela bavame ukuhlola izingane ezisanda kuzalwa ukuze babone i-CF ngesikhathi sokuhlolwa kwengane esanda kuzalwa. Lokhu kwenziwa ngokuthatha amaconsi ambalwa egazi esithendeni somntwana. Elabhorethri, leli sampula legazi lihlolwa ikhemikhali ebizwa ngokuthi i-immunoreactive trypsinogen (IRT) . Lokhu kukhiqizwa yi-pancreas. Abantu abane-CF banamazinga aphezulu e-IRT egazini labo. Izingane zihlolwa i-IRT lapho zizalwa futhi ngemva kwamasonto ambalwa.

Kodwa-ke, ezinye izimo, njengokuzalwa ngaphambi kwesikhathi, zingabangela amazinga aphezulu e-IRT. Ngakho-ke, ukuhlolwa kwe-IRT okuhle akusho ukuthi ingane ine-CF. Uma izinga le-IRT lomntwana liphakeme kunalokho obekulindelwe, udokotela uzoyala ukuhlolwa okwengeziwe ukuze enze ukuxilongwa kokugcina.

Ngezinye izikhathi (cishe ama-5% amacala), ukuhlolwa kosana olusanda kuzalwa kungase kungaboni amazinga aphezulu e-IRT kumuntu one-CF. Noma, kungenzeka ukuthi awuzange uhlolwe njalo i-CF ngesikhathi sokuzalwa. Uma wena noma ingane yakho ninezimpawu ze-CF, udokotela uzokwenza ukuhlolwa kokujuluka futhi, uma kudingeka, nezinye izivivinyo.

Ukuhlolwa kwe-cystic fibrosis (CF)

• Ukuhlolwa kokujuluka:Lokhu kulinganisa inani le-chloride ekujulukeni kwakho. Abantu abane-CF banamazinga aphezulu e-chloride ekujulukeni kwabo. Lolu vivinyo oluqondile kakhulu lokuxilonga i-CF. Kodwa-ke, kungaba yinto evamile kubantu abane-CF engajwayelekile.
• Ukuhlolwa kwezakhi zofuzo: Kuthathwa amasampula egazi ukuze kuhlolwe izinguquko ezakhi zofuzo ezibangela i-CF.
• Ukuhlolwa kwezithombe: Izinto ezifana ne-X-ray yekhala kanye nesifuba zisetshenziselwa ukuqinisekisa noma ukusekela ukuxilongwa kwe-CF. Lezi zivivinyo zezithombe zodwa azikwazi ukuxilonga i-CF.
• Ukuhlolwa kokusebenza kwamaphaphu (ama-PFT): Lokhu kulinganisa ukuthi amaphaphu akho asebenza kahle kangakanani.
• Ukukhuliswa kwe-sputum: Udokotela wakho uzothatha isampula ye-mucus ephuma emaphashini akho uma ukhwehlela bese eyihlola ukuze athole amagciwane. Ezinye izinhlobo zamagciwane, njenge -Pseudomonas, zivame kakhulu kubantu abane-CF.
• I-biopsy ye-pancreatic: Lokhu kuvumela udokotela wakho ukuthi abone ukuthi kukhona yini ama-cyst noma izilonda ku-pancreas yakho.
• Umehluko wamandla empumulo (i-NPD): Lokhu kulinganisa ishaja encane kagesi evame ukuba khona olwelwesini lwekhala. Le shaja idalwe ukunyakaza kwama-ion. Abantu abane-CF banokunyakaza okuncane kwama-ion ngenxa yendlela i-CF ethinta ngayo iziteshi zama-ion.
• Ukulinganisa kwamanje kwamathumbu (ICM): Ukuze enze lokhu kuhlolwa, udokotela uthatha isampula yezicubu ezingemuva. Ilabhorethri ilinganisa ukuthi ingakanani i-chloride ekhishwa kulesi sampula.

Iphathwa kanjani i-cystic fibrosis (CF)?

Ngeshwa, ayikho ikhambi le-CF. Kodwa-ke, ngosizo lochwepheshe we-CF nabanye eqenjini lakho lezokunakekelwa kwempilo, ungaphatha lesi sifo kanye nezimpawu zaso. Lokhu kuphathwa kuhlanganisa:

• Ukugcina imigudu yokuphefumula icacile futhi ivulekile ngokusebenzisa amasu okuphefumula kanye namadivayisi okuncibilikisa i-phlegm.
• Imithi esiza ukulungisa izinkinga ngephrotheni ethi 'CFTR` (`CFTR modulators`).
• Imithi enciphisa izimpawu ezithile.
• Qiniseka ukuthi uthola amakhalori anele futhi afanele ekudleni.
• Ukuhlinzwa.

Amasu okuhlanza imigwaqo yomoya

Uma une-CF, kunezindlela eziningana zokugcina izindlela zakho zokuphefumula zihlanzekile:

• Amasu okukhwehlela nokuphefumula: Udokotela wezokwelapha ngokomzimba ochwepheshe be-CF angakufundisa amasu okuvula imigudu yakho yokuphefumula nokukhulula amafinyila.
• Amadivayisi okucindezela komoya okuhle (i-PEP):Lawa madivayisi e-'PEP' angagqokwa emlonyeni noma njenge-'mask' ebusweni. Anikeza ukumelana, ngakho-ke kufanele usebenze kanzima ukuze uphefumule. Lokhu kuvula imigudu yomoya futhi kusunduze i-mucus iphume. Amadivayisi e-'PEP' okudlidliza (isib. `Flutter®`, `Acapella®`, `AerobikA®`, `RC-Cornet®` ) ayizinhlobo ezikhethekile ze-'PEP' ezihlanganisa ukudlidliza nekhono lokukhulula i-mucus.
• Amavesti okuvula umoya: Abizwa nangokuthi idivayisi yokuzulazula odongeni lwesifuba evame kakhulu, leli yivesti elifuthwayo elixhunywe emshinini. Ivesti liyadlidliza futhi liphule umucu.
• Ukukhipha amanzi emzimbeni kanye nokushaya: Lena yindlela yokwelapha ngokomzimba. Ungena ezindaweni ezisiza ekususeni amafinyila emaphashini akho. Omunye umuntu uthinta isifuba sakho kanye/noma umhlane ukuze asize ekukhululeni amafinyila. Lokhu kungenziwa kanye namasu okukhuthaza ukukhwehlela.

Ama-modulator e-CFTR e-cystic fibrosis

Ama-modulators e-CFTR ayiqembu lemithi esiza ukulungisa izinkinga ngamaprotheni enziwe yi-gene ye-CFTR eguquliwe futhi yandise inani leprotheni esebenza kahle ebusweni bamaseli. Awayilaphi i-CF. Kodwa abanye abantu baye baba nokuthuthuka okukhulu ezimpawini zabo kanye nobude besikhathi sokuphila. Kodwa-ke, lokhu kwelashwa kwama-modulators akufanele wonke umuntu one-CF, futhi abanye abakwazi ukukubekezelela.

Ezinye izibonelo ze-'CFTR modulators':

• `Kalydeco® (ivacaftor)`
• ``Orkambi® (ivacaftor/lumacaftor)''
• `Symdeko® (ivacaftor/tezacaftor)`
• `Trikafta® (ivacaftor/tezacaftor/elexacaftor)`

Eminye imithi yokwelapha i-cystic fibrosis

Udokotela wakho angase futhi akunikeze eminye imithi yokunciphisa ukuvuvukala, ukwelapha izifo, noma ukuphatha izimpawu. Lokhu kufaka phakathi:

• Ama-antibiotic: Udokotela wakho angase akunike ama-antibiotic ukwelapha noma ukuvimbela izifo.
• Ama-bronchodilator aphefumulayo: Ama-bronchodilator avula futhi akhulule imigudu yokuphefumula, okwenza kube lula ukuphefumula.
• Usawoti we-hypertonic ophefumulwayo: Usawoti osezixazululweni zikasawoti udonsela amanzi, okwenza kube lula ukukhwehlela.
• Imithi yokulwa nokuvuvukala: Le mithi inciphisa ukuvuvukala. Lokhu kufaka phakathi ama-corticosteroids kanye nemithi engeyona eye-steroidal yokulwa nokuvuvukala (NSAIDS) .
• Ama-enzyme e-pancreatic: Lawa asiza ekugayeni ukudla futhi amunce izakhamzimba kukho.
• Izinto zokuthambisa indle: Lezi zisiza ezimweni ezifana nokuqunjelwa futhi zenza kube lula ukuphuma kwendle.

Ukudla kwe-cystic fibrosis (CF)

Uma une-CF, izidingo zakho zokudla zihlukile kwezomuntu ongenayo i-CF. Ngenxa ye-CF, ama-pancreas akho angase angakwazi ukwenza noma ukukhiqiza ama-enzyme akusiza ukuthi ugaye ukudla. Lokhu kusho ukuthi amathumbu akho angase angakwazi ukumunca kahle izakhamzimba namafutha ekudleni kwakho.

Uchwepheshe wakho we-CF noma isazi sokudla esibhalisiwe sizokuncoma uhlelo lokudla olufanele wena. Lungafaka:

• Ukudla amakhalori nsuku zonke. Lokhu kungaba cishe kabili kunomuntu ongenawo i-CF.
• Ukudla ukudla okunamafutha amaningi. Lokhu kubalulekile ukuze uthole amavithamini amaningi ancibilikayo emafutheni.
• Ukugcina isisindo somzimba esiphezulu kunesijwayelekile kusukela ebuntwaneni. Lokhu kungakusiza ukuthi ukhule ube mude futhi amaphaphu akho akhule. Lokhu kungasiza ngezimpawu njengoba ukhula.
• Ukuthatha ama-capsules e-enzyme. Izithasiselo ze-enzyme ziyasiza ekugayeni ukudla.
• Ukwengeza usawoti owengeziwe ekudleni kwakho. Lokhu kusiza ekuthatheni indawo kasawoti owengeziwe olahlekelwa ngumzimba wakho ngokujuluka. Lokhu kubaluleke kakhulu ngesikhathi sezulu esishisayo nesinomswakama kanye nalapho uzivocavoca. Buza udokotela wakho ukuthi udinga usawoti ongakanani ngosuku.

Ukuhlinzwa kwe-cystic fibrosis (CF)

Ungadinga ukuhlinzwa ngenxa ye-CF noma inkinga ye-CF. Lokhu kungafaka:

• Ukuhlinzwa okuhlobene nekhala noma ama-sinuses.
• Ukuhlinzwa ukuze kususwe izithiyo zamathumbu.
• Ukufakelwa kwamaphaphu.
• Ukufakelwa kwesibindi.

Ingabe i-cystic fibrosis (CF) iyisimo esisongela ukuphila?

Yebo, i-CF iyisimo esisongela ukuphila. Imbangela eyinhloko yokufa ukulimala kwamaphaphu okubangelwa uketshezi olujiyile kanye nokutheleleka kwamaphaphu okuvamile.

Ingakanani iminyaka yokuphila yomuntu one-cystic fibrosis (CF)?

Ngokusho kochwepheshe, eminyakeni yamuva nje isikhathi sokuphila somuntu ozelwe ene-CF besicishe sibe yiminyaka engama-50. Eminyakeni embalwa edlule, isikhathi sokuphila besiphakathi kweminyaka engama-30 nengama-40, kodwa lokhu kuye kwanda eminyakeni yamuva nje ngenxa yentuthuko yezindlela zokwelapha.

Abantu abane-CF engavamile bavame ukuba nesikhathi sokuphila isikhathi eside kunalabo abane-CF yakudala.

Yini okufanele ngiyilindele uma ngine-CF?

Akukho ukwelashwa kwe-CF. Wena noma ingane yakho nizodinga ukwelashwa impilo yonke ukuze niyilawule. Lokhu kuhlanganisa ukwelapha izifo, ukugcina ukudla okunomsoco, nokubona uchwepheshe we-CF njalo. Kodwa-ke, ukwelashwa okusha kuye kwasiza izingane ezine-CF ukuba ziphile kahle zize zibe ngabantu abadala futhi zibe nekhwalithi yokuphila engcono.

Ukwelashwa kusebenza kahle kakhulu uma i-CF itholakala kusenesikhathi. Yingakho ukuhlolwa kwezingane ezisanda kuzalwa kubaluleke kakhulu. Ukuqala ukwelashwa okufana nama-modulators e-CFTR zisencane kungathuthukisa impilo yesikhathi eside futhi kwandise isikhathi sokuphila.

Ingabe i-CF ingavinjelwa?

Ngenxa yokuthi i-CF yinto ozalwa nayo, ayikho indlela yokuyivimbela. Uma ungumthwali we-CFTR gene mutation, ungabuza udokotela wakho mayelana nokuhlolwa kwezakhi zofuzo ngaphambi kokubeletha kanye namathuba okuthi izingane zakho zizoba ne-CF.

Ngingazinakekela kanjani?

Ukuzinakekela nge-CF kusho ukusebenzisana nethimba lakho lezokunakekelwa kwempilo ukuze wakhe uhlelo lokwelashwa. Ukuze uhlale uphilile, udinga ukulandela lolu hlelo eduze kakhulu. Luhlanganisa:

• Landela ngokuqinile inqubo yakho yokuhlanza ukuphefumula.
• Ukuthatha imithi njengoba kuyalelwe.
• Qhubeka nokuya emitholampilo nethimba lakho lezokwelapha le-CF.

Thola izincomo kodokotela bakho mayelana nohlelo lokudla okunempilo kanye nokuzivocavoca okuphephile okufanele wena. Buza udokotela wakho ukuthi ukuvuselelwa kwamaphaphu kuyicebo elihle yini kuwe.

Unganciphisa ingozi yakho yokutheleleka ngokugwema abantu abagulayo, usebenzise amasu amahle okugeza izandla, kanye nokuthola imijovo enconywayo.

Ungahlanganyela futhi ezivivinyweni zemitholampilo ezihlola ukwelashwa okusha kwe-CF. Buza udokotela wakho ukuthi kukhona yini okufanele wena. Qiniseka ukuthi uthola ulwazi oluphelele mayelana nezinzuzo nezingozi zezivivinyo zemitholampilo.

Kufanele ngimbone nini udokotela wami?

Yiya kuzo zonke izikliniki ezihleliwe namalungu ethimba lakho lezokunakekelwa kwempilo. Khuluma nodokotela wakho uma unemibuzo mayelana nohlelo lwakho lokwelashwa noma izimpawu zakho. Mbuze ukuthi enzeni uma unezimpawu zokutheleleka. Ungamtshela futhi uma udinga usizo ngezinkinga zomphakathi noma ezingokomzwelo.

Kufanele ngiye nini eMnyangweni Wezimo Eziphuthumayo (i-ETU) ?

Uma unalezi zimpawu ezinzima, iya ekamelweni eliphuthumayo ngokushesha:

• Umkhuhlane ophezulu (ngaphezu kwama-degrees Fahrenheit angu-103/40 degrees Celsius).
• Ubunzima bokuphefumula.
• Akukho noma kuncane kakhulu ukuphuma komchamo.
• Ubuhlungu obungapheli esifubeni noma esiswini.
• Isiyezi.
• Ukudideka.
• Ubuhlungu obukhulu bemisipha noma ubuthakathaka.
• Ukuquleka.
• Umbala oluhlaza okwesibhakabhaka wesikhumba, izindebe, noma izinzipho (`i-cyanosis' - lokhu kungaba uphawu lwamazinga aphansi omoya-mpilo egazini noma ezicutshini zakho).
• Uma umkhuhlane noma ukukhwehlela kuba ngcono noma kuphele, kuba kubi futhi.

Yimiphi imibuzo okufanele ngiyibuze udokotela wami?

Ungabuza udokotela wakho imibuzo efana nale:

• Yiziphi izindlela zokwelapha enginazo?
• Yiluphi uhlelo lokudla okunempilo engingalulandela?
• Yini engingayenza ukuze ngiphathe izimpawu zami?
• Yiziphi izimpawu zokutheleleka okufanele ngiziqaphele?
• Kufanele ngiphinde ngikubone nini futhi?
• Yiziphi izimpawu okufanele ngiye ekamelweni lezimo eziphuthumayo ukuze ngizihlole?
• Uyafuna ukuhlola amanye amalungu omndeni?

Kungani abantu abane-CF kungafanele bathintane?

Ochwepheshe bezempilo ngokuvamile batusa ukuthi abantu abane-cystic fibrosis (CF) bagweme ukusondelana nabanye abantu. Lokhu kungenxa yokuthi abantu abane-CF bangazithola kalula izifo abanye abangalawula kalula. Banamathuba amaningi okusabalalisa amagciwane kwabanye abane-CF (nabo abanezifo okunzima ukuzilawula). Abantu abane-CF kufanele futhi bagweme noma ubani ogulayo.

Ekugcineni, okuthile (Umyalezo Wokuya Ekhaya)

Kuvamile ukuzizwa ucindezelekile kancane uma utholakala unesifo sokuphila kwakho konke. Kodwa-ke, ukwelashwa okusha kanye nokuqonda kangcono i-cystic fibrosis kusho ukuthi unesikhathi esengeziwe sokuthatha izinto usuku ngalunye ngesikhathi. Abantu abaningi abane-CF manje bangalindela ukuphila impilo egcwele baze babe ngabantu abadala. Ingane etholakale ine-CF namuhla cishe izoba nezinketho eziningi zokwelapha esikhathini esizayo.

Qoqa ithimba labathandekayo nochwepheshe bezokwelapha obathembayo ukuze baqonde ukuthi yini ongayilindela, ukuze bakusize ubhekane nezinselele zokuphila kwansuku zonke. Futhi, ungesabi ukuthola umbono wesibili nganoma yisiphi isikhathi endleleni. Awuwedwa, futhi baningi abantu abangakusiza kulolu hambo.

I- Cystic fibrosis, izifo zofuzo, izifo zamaphaphu, i-mucus, i-CFTR gene, impilo yabantwana, izinkinga zokuphefumula