Yintoni iCystic Fibrosis? Masiyiqonde ngokulula!

Mhlawumbi ukhe weva ukuba abanye abantu bazalwa benesifo semfuza, akunjalo? I-Cystic Fibrosis (CF) sisifo semfuza. Abantu abaninzi bacinga ukuba esi sisifo esichaphazela imiphunga kuphela, kuba ubunzima bokuphefumla kunye nosulelo oluqhelekileyo lwemiphunga luqhelekile kwesi sifo. Kodwa ibali liyinkimbinkimbi ngakumbi kunoko. Makhe sijonge ukuba yintoni.

Yintoni kanye kanye i-cystic fibrosis (CF)?

Ngamafutshane, i-cystic fibrosis (CF) yimeko yemfuza ebangela ukuba kubekho inani elikhulu le-mucus etyebileyo nenamathelayo ngaphakathi kwamalungu athile emizimbeni yethu. Le mucus ityebileyo ingonakalisa loo malungu kwaye iphazamise ukusebenza kwawo.

Ngokwesiqhelo, i-mucus emiphungeni nasempumlweni yethu imanzi kancinci kwaye incinci. Igcina ezo ndawo zimanzi kwaye ibamba ukungcola kunye nenkunkuma. Kodwa kubantu abane-CF, utshintsho lwezakhi zofuzo lutshintsha indlela eveliswa ngayo le mucus. Iproteni ebangela oku ilahlekile okanye ayisebenzi kakuhle. Ngenxa yoko, iityuwa ezinciphisa i-mucus zibanjwa ngaphakathi kwiiseli, nto leyo eyenza i-mucus ibe nkulu kwaye inamathele.

Nangona abantu abaninzi becinga ukuba sisifo semiphunga, i-CF ifumene igama layo kuba ibangela amaqhuqhuva kunye namanxeba (i-fibrosis) kwi-pancreas. Lo monakalo, kunye nokuqina kolwelo, unokuthintela imibhobho ekhupha ii-enzymes zokugaya ukutya ezinceda ekugayeni ukutya esikutyayo. Oku kunokuthintela umzimba ekufumaneni izondlo ekutyeni ngokufanelekileyo. Ukongeza kwimiphunga kunye ne-pancreas, inokuchaphazela nesibindi, ii-sinuses, amathumbu, kunye namalungu esini.

I-CF yimeko yemfuza umntu azalwa nayo. Oku kuthetha ukuba yimeko yobomi bakhe bonke enokuba mandundu ngokuhamba kwexesha. Abantu abane-CF banokuba nobomi obufutshane kunabantu abangenayo i-CF.

Ngaba kukho iintlobo eziphambili ze-cystic fibrosis (CF)?

Ewe, iintlobo ezimbini eziphambili ze-`CF` zinokuchongwa:

1. I-Cystic fibrosis eqhelekileyo: Oku kudla ngokuchaphazela amalungu amaninzi emzimbeni. Le meko idla ngokuchongwa kwiminyaka embalwa yokuqala yobomi.

2. I-Atypical cystic fibrosis: Olu luhlobo lwe-CF olungenzima kangako nolungenabungozi kangako. Lunokuchaphazela ilungu elinye kuphela, okanye iimpawu zisenokuvela ziphele. Ludla ngokuchongwa kubantwana abadala okanye kubantu abadala abancinci.

Zithini iimpawu ze-cystic fibrosis (CF)?

Umntu one-CF unokufumana iimpawu ezifana nezi:

• Usulelo oluqhelekileyo lwemiphunga (umz., i-pneumonia ephindaphindayo okanye i-bronchitis)). Khawucinge nje, abanye abantwana abancinci bahlala benempumlo egobhozayo, ukukhohlela, kunye nesandi sokuphefumla esifubeni sabo, kwaye nokuba benamayeza, bahlala bebuya ngokuphindaphindiweyo ngaphandle kokukhululeka. Yiyo loo nto kunjalo.
• Ukuchitha indle ekhululekileyo okanye enamafutha.
• Ubunzima bokuphefumla.
• Ukuphefumla sisandi esivakala rhoqo, esirhawuzelayo esiphuma esifubeni.
• Usulelo oluqhelekileyo lwe-sinus.
• Ukukhohlela okungapheliyo.
• Ukukhula kuhamba kancinci.
• Ukungaphumeleli ukukhula, nangona utya kakuhle kwaye ufumana iikhalori ezifunwa ngumzimba wakho, yimeko apho ungatyebi okanye ungabi mncinci.

Iimpawu ze-atypical cystic fibrosis (i-Atypical CF)

Abantu abane-CF engaqhelekanga banokuba nezinye zeempawu ezikhankanyiweyo apha ngasentla. Ekuhambeni kwexesha, banokufumana izinto ezifana nezi:

• I-sinusitis engapheliyo.
• Iipolyps zempumlo.
• Amanqanaba angaqhelekanga e-electrolyte emzimbeni anokubangela ukuphelelwa ngamanzi emzimbeni okanye ubushushu.
• Urhudo.
• I-Pancreatitis.
• Ukunciphisa umzimba ngengozi.

Yintoni ebangela i-cystic fibrosis (CF)?

Eyona nto ibangela i-CF kukuguquka (utshintsho okanye ukuguqulwa) kwi-gene ebizwa ngokuba yi-CFTR. I-gene ye-CFTR yenza iproteni esebenza njengomjelo we-ion kumphezulu weeseli. Cinga ngayo njengesango elincinci kwi-membrane yeseli. La masango avumela amasuntswana athile ukuba adlule.

Iproteni eveliswa yi-'CFTR` gene' idla ngokusebenza njengesango le -chloride ions (uhlobo lwetyuwa olune-negative electrical charge). Xa ii-chloride ions ziphuma kwiseli, amanzi nawo ayatsalwa. Oku kulapho i-mucus iba ncinci kwaye ityibilika. Kodwa kubantu abane-'CF`, le nkqubo ayenzeki kakuhle ngenxa yotshintsho kwi-'CFTR` gene. Ii-chloride ions emva koko zivaleleka ngaphakathi kwiiseli, zishiya i-mucus ityebile kwaye inamathela.

Kukho iintlobo ezahlukeneyo zotshintsho lwezakhi zofuzo lwe-CFTR (iiklasi zoku-1 ukuya ku-VI). Ezinye iinguqulelo azivelisi protein, ezinye zivelisa inani elincinci leprotein, kwaye ezinye azivelisi protein eziyenzayo.

Ngaba i-cystic fibrosis (CF) yimeko yokuzalwa?

Ewe, i-'CF' yimeko yemfuza efunyanwa njengelifa ukususela ekuzalweni. Umntu one-'CF' ufumana iikopi ezimbini zale gene ye-'CFTR' eguquliweyo – enye ivela kumama, enye ivela kutata (oku kubizwa ngokuba yi -'autosomal recessive' inheritance).

Abazali bakho akufuneki babe ne-CF ukuze ube ne-CF. Enyanisweni, uninzi lweentsapho azinazo imbali yentsapho ye-CF. Umntu onekopi enye yejini eguquliweyo ubizwa ngokuba yi-carrier . Ii-carriers azibonisi zimpawu ze-CF.

Ngaba abantu abadala banokuba ne-cystic fibrosis (CF)?

Hayi, uzalwa une-gene mutation ebangela i-CF. Nangona kunjalo, ukuba iimpawu zincinci kakhulu, okanye ukuba ziyafika zidlule, abanye abantu basenokungafumani zimpawu de kube kudala ebomini, mhlawumbi bade babe ngabantu abadala.

Ziziphi iingxaki ezinokubakho ngenxa ye-CF?

I-CF inokubangela iingxaki ezifana nezi:

• Usulelo: I-mucus etyebileyo ibamba iintsholongwane emiphungeni yakho nakwimibhobho yomoya, nto leyo eyenza kube nzima ukuba ziphume. Oku kunokukhokelela kwiintsholongwane ezixhaphakileyo.
• Ukungabikho kwe-vas deferens ezalwa nayo (CBAVD): Kule meko, amadoda awanazo i-vas deferens, umbhobho othwala isidoda. Ke ngoko, adinga uncedo ngonyango lokuzala ukuba afuna ukuba nabantwana.
• Isifo seswekile: Isifo seswekile esinxulumene ne-cystic fibrosis sinokwenzeka ngenxa yomonakalo kwi-pancreas.
• Ukungondleki: Ukungabikho kwe-mucus etyebileyo kwinkqubo yokugaya ukutya kunye nee-enzymes ze-pancreatic ezinceda ekugayeni ukutya kwandisa umngcipheko wokungondleki kakuhle.
• I-Osteopenia kunye ne-Osteoporosis: Izifo ezibuthathaka ngamathambo zinokuvela ngenxa yokungakwazi ukufunxa kakuhle izondlo kwinkqubo yokugaya ukutya.
• Iingxaki zokukhulelwa: I-CF inokuchaphazela inkqubo yokugaya ukutya kwaye ibangele ukungondleki. Oku kwandisa umngcipheko weengxaki zokukhulelwa. Ukuzalwa kwangaphambi kwexesha yeyona ngxaki ixhaphakileyo.

Ifunyanwa njani i-cystic fibrosis (CF)?

Oogqirha badla ngokuhlola i-CF kwiintsana ezisandul’ ukuzalwa ngexesha lokuhlolwa kweentsana ezisandul’ ukuzalwa. Oku kwenziwa ngokuthatha amathontsi ambalwa egazi esithendeni somntwana. Kwilebhu, le sampuli yegazi ivavanywa ikhemikhali ebizwa ngokuba yi -immunoreactive trypsinogen (IRT) . Le khemikhali iveliswa yipancreas. Abantu abane-CF banamanqanaba aphezulu e-IRT egazini labo. Iintsana zivavanywa i-IRT xa zizalwa kwaye emva kweeveki ezimbalwa.

Nangona kunjalo, ezinye iimeko, ezinje ngokuzalwa ngaphambi kwexesha, zinokubangela amazinga aphezulu e-IRT. Ngoko ke, uvavanyo lwe-IRT oluqinisekileyo aluthethi ukuba umntwana une-CF. Ukuba inqanaba le-IRT lomntwana liphezulu kunokuba bekulindelwe, ugqirha uya kuyalela iimvavanyo ezongezelelweyo ukuze enze uxilongo lokugqibela.

Ngamanye amaxesha (malunga ne-5% yamatyala), uhlolo losana olusandul’ ukuzalwa lusenokungafumani amanqanaba aphezulu e-IRT kumntu one-CF. Okanye, kusenokwenzeka ukuba awuzange uhlolwe rhoqo i-CF ekuzalweni kwakho. Ukuba wena okanye umntwana wakho nineempawu ze-CF, ugqirha uya kwenza uvavanyo lokubila kwaye, ukuba kuyimfuneko, nezinye iimvavanyo.

Uvavanyo lwe-cystic fibrosis (CF)

• Uvavanyo lokubila:Oku kulinganisa ubungakanani be-chloride ekujuleni kwakho. Abantu abane-CF banezinga eliphezulu le-chloride ekujuleni kwabo. Olu lolona vavanyo lukhethekileyo lokufumanisa i-CF. Nangona kunjalo, kunokuba yinto eqhelekileyo kubantu abane-CF engaqhelekanga.
• Uvavanyo lwemfuza: Kuthathwa iisampulu zegazi ukujonga utshintsho kwiimfuza ezibangela i-CF.
• Uvavanyo lokufota: Izinto ezifana ne -X-rays yempumlo kunye nesifuba zisetyenziselwa ukuqinisekisa okanye ukuxhasa ukuxilongwa kwe-CF. Ezi vavanyo zokufota zodwa azinakukwazi ukufumanisa i-CF.
• Uvavanyo lomsebenzi wemiphunga (ii-PFT): Olu vavanyo lulinganisa indlela esebenza kakuhle ngayo imiphunga yakho.
• Ukukhula kwe-sputum: Ugqirha wakho uza kuthatha isampuli ye-mucus ephuma emiphungeni yakho xa ukhohlela aze ayivavanye ukuba ayinayo na intsholongwane. Ezinye iintlobo ze-bacteria, ezifana ne -Pseudomonas, zixhaphake kakhulu kubantu abane-CF.
• I-Pancreatic biopsy: Oku kuvumela ugqirha wakho ukuba abone ukuba kukho naziphi na ii-cysts okanye izilonda kwi-pancreas yakho.
• Umahluko we-nasal potential (NPD): Oku kulinganisa itshaja encinci yombane ehlala ikhona kulwelo lwempumlo. Le tshaja idalwe kukuhamba kwee-ion. Abantu abane-CF banokuhamba okuncinci kwee-ion ngenxa yendlela i-CF echaphazela ngayo imijelo yee-ion.
• Umlinganiselo wamandla amathumbu (ICM): Ukuze enze olu vavanyo, ugqirha uthatha isampuli yezicubu ezisemathunjini. Ilebhu ilinganisa ukuba ingakanani i-chloride ekhutshwa kule sampuli.

Inyangwa njani i-cystic fibrosis (CF)?

Ngelishwa, akukho nyango lwe-CF. Nangona kunjalo, ngoncedo lweengcali ze-CF kunye nabanye kwiqela lakho lezonyango, ungalawula esi sifo kunye neempawu zaso. Olu lawulo luquka:

• Ukugcina iindlela zomoya zicocekile kwaye zivulekile ngokusebenzisa iindlela zokuphefumla kunye nezixhobo zokunyibilikisa i-phlegm.
• Amayeza anceda ukulungisa iingxaki ngeproteni ye-`CFTR` (`CFTR modulators`).
• Amayeza anciphisa iimpawu ezithile.
• Qiniseka ukuba ufumana iikhalori ezaneleyo nezifanelekileyo ekutyeni.
• Utyando.

Iindlela zokucoca umoya

Ukuba une-CF, kukho iindlela ezininzi zokugcina iindlela zakho zomoya zicocekile:

• Iindlela zokukhwehlela nokuphefumla: Ingcali yezonyango egxile kwi-CF ingakufundisa iindlela zokuvula indlela yakho yomoya nokukhulula i-mucus.
• Izixhobo zoxinzelelo lomoya oluchanekileyo (i-PEP):Ezi zixhobo ze-'PEP' zinokunxitywa emlonyeni okanye njenge-'mask' ebusweni. Zinika ukumelana, ngoko ke kufuneka usebenze nzima ukuze uphefumle. Oku kuvula iindlela zomoya kwaye kutyhale i-mucus iphume. Izixhobo ze-'PEP' zokungcangcazela (umz. `Flutter®`, `Acapella®`, `AerobikA®`, `RC-Cornet®` ) ziintlobo ezikhethekileyo ze-`PEP` ezidibanisa ukungcangcazela nokukwazi ukukhulula i-mucus.
• Iivesti zokucoca umoya: Ezikwabizwa ngokuba sisixhobo sokushukuma kwesifuba esinamaza amaninzi, esi sisixhobo esinokufuthwa esiqhagamshelwe kumatshini. Ivesti iyangcangcazela ize iphule ulwelo.
• Ukukhupha amanzi emzimbeni kunye nokubetha: Le yindlela yonyango lomzimba. Ungena kwiindawo ezinceda ukususa ulwelo emiphungeni yakho. Omnye umntu ucofa isifuba sakho okanye umqolo wakho ukunceda ukukhulula ulwelo. Oku kungenziwa kunye neendlela zokukhuthaza ukukhohlela.

Iimodulators ze-CFTR ze-cystic fibrosis

Iimodulators ze-CFTR ziluhlobo lwamayeza anceda ukulungisa iingxaki ngeeproteni ezenziwe yi-CFTR gene eguquliweyo kwaye anyuse ubungakanani beproteni esebenza ngokufanelekileyo kumphezulu weeseli. Azinyangi i-CF. Kodwa abanye abantu baye baba nophuculo olukhulu kwiimpawu zabo kunye nobude bobomi babo. Nangona kunjalo, olu nyango lweemodulators alufanelekanga kubo bonke abantu abane-CF, kwaye abanye abakwazi ukulunyamezela.

Eminye imizekelo ye-`CFTR modulators`:

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

Amanye amayeza e-cystic fibrosis

Ugqirha wakho angakunika neminye imithi yokunciphisa ukudumba, ukunyanga izifo, okanye ukulawula iimpawu. Ezi ziquka:

• Ii-antibiotics: Ugqirha wakho unokukunika ii-antibiotics ukunyanga okanye ukuthintela usulelo.
• Iibronchodilators ezifuthwayo: Iibronchodilators zivula kwaye ziphumze iindlela zomoya, nto leyo eyenza kube lula ukuphefumla.
• Ityuwa ephumayo ene-hypertonic saline: Ityuwa ekwizicombululo ze-saline itsala amanzi, nto leyo enciphisa i-mucus kwaye yenze kube lula ukukhwehlela.
• Amayeza okulwa nokuvuvukala: La mayeza anciphisa ukudumba. La aquka ii-corticosteroids kunye namayeza angengo-steroidal anti-inflammatory (NSAIDS) .
• Iienzymes zePancreatic: Ezi zinceda ekugayeni ukutya nasekufunxeni izondlo kuko.
• Izinto zokuthambisa indle: Ezi zinceda kwiimeko ezifana nokuqhinwa kwaye zenza kube lula ukuphuma kwendle.

Ukutya kwe-cystic fibrosis (CF)

Ukuba une-CF, iimfuno zakho zokutya zahlukile kwezomntu ongena-CF. Ngenxa ye-CF, i-pancreas yakho isenokungakwazi ukwenza okanye ukukhupha ii-enzymes ezikunceda ekugayeni ukutya. Oku kuthetha ukuba amathumbu akho asenokungakwazi ukufunxa kakuhle izondlo namafutha ekutyeni kwakho.

Ingcali yakho ye-CF okanye ingcali yokutya ebhalisiweyo iya kukucebisa isicwangciso sesondlo. Singabandakanya:

• Ukutya iikhalori zemihla ngemihla. Oku kunokuba malunga nephindwe kabini kunomntu ongena-CF.
• Ukutya ukutya okunamafutha amaninzi. Oku kubalulekile ukuze ufumane iivithamini ezinyibilikayo kumafutha amaninzi.
• Ukugcina ubunzima bomzimba obuphezulu kunobuqhelekileyo ukususela ebuntwaneni. Oku kunokukunceda ukuba ukhule ube mde kwaye imiphunga yakho ikhule. Oku kunokunceda ngeempawu njengoko ukhula.
• Ukuthatha iikhaphu ze-enzyme supplement. Ii-enzyme supplements zinceda ekugayweni kokutya.
• Ukongeza ityuwa engakumbi ekutyeni kwakho. Oku kunceda ekuthatheni indawo yetyuwa eyongezelelweyo elahlekayo ngumzimba wakho ngokubila. Oku kubaluleke kakhulu ngexesha lemozulu eshushu nefumileyo naxa uzilolonga. Buza ugqirha wakho malunga netyuwa oyifunayo ngosuku.

Utyando lwe-cystic fibrosis (CF)

Usenokufuna utyando lwe-CF okanye ingxaki ye-CF. Oku kungabandakanya:

• Utyando olunxulumene nempumlo okanye ii-sinuses.
• Utyando lokususa imiqobo yamathumbu.
• Ukufakelwa imiphunga.
• Ukufakelwa kwesibindi.

Ngaba i-cystic fibrosis (CF) yimeko esongela ubomi?

Ewe, i-CF yimeko esongela ubomi. Eyona nto ibangela ukufa kukonakala kwemiphunga okubangelwa yi-mucus etyebileyo kunye nosulelo oluqhelekileyo lwemiphunga.

Ingakanani iminyaka yobomi bomntu one-cystic fibrosis (CF)?

Ngokutsho kweengcali, kwiminyaka yakutshanje ubomi bomntu ozelwe ene-CF bumalunga neminyaka engama-50. Kwiminyaka embalwa eyadlulayo, ubomi obulindelekileyo babuphakathi kweminyaka engama-30 ukuya kwengama-40, kodwa oku kuye kwanda kwiminyaka yakutshanje ngenxa yokuqhubela phambili kweendlela zonyango.

Abantu abane-CF engaqhelekanga badla ngokuba nobomi obude kunabo bane-CF yakudala.

Yintoni endimele ndiyilindele ukuba ndine-CF?

Akukho nyango lwe-CF. Wena okanye umntwana wakho niza kufuna unyango lobomi bonke ukuze nilawule esi sifo. Oku kuquka ukunyanga izifo, ukugcina ukutya okunempilo, kunye nokubona ingcali ye-CF rhoqo. Nangona kunjalo, unyango olutsha luye lwanceda abantwana abane-CF baphile kakuhle baze babe ngabantu abadala kwaye babe nobomi obungcono.

Unyango lusebenza kakuhle xa i-CF ifunyenwe kwangethuba. Yiyo loo nto ukuvavanywa kweentsana ezisandul’ ukuzalwa kubaluleke kakhulu. Ukuqala unyango olufana nee-CFTR modulators zisencinci kunokuphucula impilo yexesha elide kwaye kwandise ixesha lokuphila.

Ngaba i-CF ingathintelwa?

Ngenxa yokuba i-CF yinto ozalwa nayo, akukho ndlela yokuyithintela. Ukuba ungumthwali we-CFTR gene mutation, ungabuza ugqirha wakho malunga novavanyo lwe-genetic ngaphambi kokukhulelwa kunye nethuba lokuba abantwana bakho bafumane i-CF.

Ndingazinyamekela njani?

Ukuzinyamekela nge-CF kuthetha ukusebenzisana neqela lakho lezempilo ukuze uphuhlise isicwangciso sonyango. Ukuze uhlale usempilweni, kufuneka ulandele esi sicwangciso ngokusondeleyo. Siquka:

• Landela ngokungqongqo indlela yakho yokucoca umoya.
• Ukuthatha amayeza njengoko kuchaziwe.
• Qhubeka nokuya kwiikliniki kunye neqela lakho lezonyango le-CF.

Fumana iingcebiso koogqirha bakho malunga nesicwangciso sokutya okunempilo kunye nomsebenzi womzimba okhuselekileyo ofanelekileyo kuwe. Buza ugqirha wakho ukuba ukulungiswa kwemiphunga kukulungele na.

Unganciphisa umngcipheko wakho wokosuleleka ngokuphepha abantu abagulayo, uziqhelise iindlela ezilungileyo zokuhlamba izandla, kwaye ufumane imigonyo ecetyiswayo.

Ungathabatha inxaxheba kwiimvavanyo zeklinikhi ezivavanya unyango olutsha lwe-CF. Buza ugqirha wakho ukuba kukho naziphi na ezifanelekileyo kuwe. Qiniseka ukuba ufumana ulwazi olupheleleyo malunga neenzuzo kunye neengozi zeemvavanyo zeklinikhi.

Ndifanele ndimbone nini ugqirha wam?

Yiya kuzo zonke iikliniki ezicwangcisiweyo kunye namalungu eqela lakho lezempilo. Thetha nogqirha wakho ukuba unemibuzo malunga nesicwangciso sakho sonyango okanye iimpawu zakho. Babuze ukuba benze ntoni ukuba uneempawu zosulelo. Ungabaxelela nokuba ufuna uncedo ngeengxaki zentlalo okanye zeemvakalelo.

Ndingaya nini kwiSebe leeNgxamiseko (i-ETU) ?

Ukuba unezi mpawu ziqatha, yiya kwigumbi likaxakeka ngokukhawuleza:

• Umkhuhlane ophezulu (ngaphezulu kwe-103 degrees Fahrenheit/40 degrees Celsius).
• Ubunzima bokuphefumla.
• Akukho okanye kuphuma umchamo omncinci kakhulu.
• Intlungu engapheliyo esifubeni okanye esiswini.
• Isiyezi.
• Ukudideka.
• Intlungu okanye ubuthathaka obukhulu bemisipha.
• Ukuxhuzula.
• Umbala oluhlaza okwesibhakabhaka wolusu, imilebe, okanye iinzipho ('i-cyanosis' - oku kungaba luphawu lokuba amanqanaba e-oksijini aphantsi egazini okanye kwizicubu zakho).
• Ukuba umkhuhlane okanye ukukhohlela kuyaphola okanye kuyaphela, kuya kuba mandundu kwakhona.

Ndingayibuza yiphi imibuzo ugqirha wam?

Ungabuza ugqirha wakho imibuzo efana nale:

• Ziziphi iindlela zonyango endinazo?
• Yeyiphi isicwangciso sokutya okunempilo endinokusilandela?
• Ndingenza ntoni ukulawula iimpawu zam?
• Zeziphi iimpawu zosulelo ekufuneka ndizijonge?
• Ndingakubona nini kwakhona?
• Zeziphi iimpawu ekufuneka ndiye kwigumbi likaxakeka ukuze ndizifumane?
• Ngaba ufuna ukujonga amanye amalungu osapho?

Kutheni abantu abane-CF bengafanele bachukumisane?

Iingcali zempilo ngokubanzi zicebisa ukuba abantu abane-cystic fibrosis (CF) baphephe ukunxibelelana nabanye abantu. Oku kungenxa yokuba abantu abane-CF banokuzifumana lula iintsholongwane abanye abantu abanokuzilawula ngokulula. Bakwanokusasaza iintsholongwane kwabanye abantu abane-CF (nabo banezifo ekunzima ukuzilawula). Abantu abane-CF kufuneka baphephe nabani na ogulayo.

Ekugqibeleni, into ethile (Umyalezo Wokuya Ekhaya)

Kuqhelekile ukuziva uxinezelekile kancinci xa ufunyaniswa ukuba unesimo sobomi bonke. Nangona kunjalo, unyango olutsha kunye nokuqonda ngcono i-cystic fibrosis kuthetha ukuba unexesha elingakumbi lokuthatha izinto ngenye imini. Abantu abaninzi abane-CF ngoku banokulindela ukuphila ubomi obupheleleyo de babe ngabantu abadala. Umntwana ofunyaniswe ene-CF namhlanje usenokuba neendlela ezininzi zonyango kwixesha elizayo.

Qokelela iqela labantu obathandayo kunye neengcali zonyango obathembayo ukuze baqonde into omawuyilindele, ukuze bakuncede ujongane nemingeni yobomi bemihla ngemihla. Kwaye, ungoyiki ukufumana uluvo lwesibini nangaliphi na ixesha endleleni. Awuwedwa, kwaye baninzi abantu abanokukunceda kulo lonke olu hambo.

I- Cystic fibrosis, izifo zemfuza, izifo zemiphunga, i-mucus, i-CFTR gene, impilo yabantwana, iingxaki zokuphefumla