Kuyini Ukuphila okulindelwe kubantu abaneCystic Fibrosis?

-Delile

• Yini i-cystic fibrosis?
• Siyini isikhathi sokuphila?
• Ilashwa kanjani?
• Kuvame kangakanani i-cystic fibrosis?
• Ziyini izimpawu nobunzima?
• Ukuphila ne-cystic fibrosis

Yini i-cystic fibrosis?

ICystic fibrosis yisimo esingelapheki esidala izifo eziphindaphindayo zamaphaphu futhi sikwenze kube nzima ukuphefumula.Kubangelwa ukukhubazeka kuhlobo lweCFTR. Ukungajwayelekile kuthinta izindlala ezikhiqiza amafinyila nomjuluko. Izimpawu eziningi zithinta izinhlelo zokuphefumula nezokugaya ukudla.

Abanye abantu baphatha isakhi sofuzo esinesici, kepha ungalokothi ube ne-cystic fibrosis. Ungasithola lesi sifo kuphela uma uzuza ifa lesici esingalungile kubo bobabili abazali.

Lapho abathwali ababili benengane, kunamathuba angamaphesenti angama-25 kuphela okuthi ingane ithuthuke i-cystic fibrosis. Kunethuba elingamaphesenti angama-50 lokuthi ingane izoba ngumthwali, kanti ithuba elingamaphesenti angama-25 lokuthi ingane ngeke likuzuze njengefa ukuguquka.

Kunezinguquko eziningi ezahlukahlukene zofuzo lwe-CFTR, ngakho-ke izimpawu nobukhulu besifo buyahluka kuye ngomuntu nomuntu.

Qhubeka ufunde ukuze ufunde kabanzi mayelana nokuthi ngubani osengozini, izinketho zokwelashwa ezithuthukisiwe, nokuthi kungani abantu abane-cystic fibrosis baphila isikhathi eside kunanini ngaphambili.

Siyini isikhathi sokuphila?

Eminyakeni yamuva nje, kube nentuthuko ekwelapheni okutholakala kubantu abane-cystic fibrosis. Kakhulu ngenxa yalezi zindlela zokwelashwa ezithuthukisiwe, isikhathi sokuphila sabantu abane-cystic fibrosis besilokhu sithuthuka ngokuqinile eminyakeni engama-25 edlule. Emashumini ambalwa edlule, izingane eziningi ezine-cystic fibrosis azange zisinde lapho sezikhulile.

E-United States nase-United Kingdom namuhla, isilinganiso seminyaka yokuphila kwabantu yiminyaka engama-35 kuya kwengama-40. Abanye abantu baphila ngaphezu kwalokho.

Isikhathi sokuphila siphansi kakhulu emazweni athile, kufaka phakathi i-El Salvador, India, neBulgaria, lapho kungaphansi kweminyaka eyi-15.

Ilashwa kanjani?

Kunamasu amaningi kanye nezindlela zokwelapha ezisetshenziselwa ukwelapha i-cystic fibrosis. Inhloso eyodwa ebalulekile ukukhulula amafinyila nokugcina imigwaqo yomoya icacile. Enye inhloso ukuthuthukisa ukumuncwa kwezakhamzimba.

Njengoba kunezimpawu ezahlukahlukene kanye nobukhulu bezimpawu, ukwelashwa kwehlukile kumuntu ngamunye. Izinketho zakho zokwelashwa zincike ebudaleni bakho, kunoma iziphi izinkinga, nokuthi uphendula kahle kanjani ekwelashweni okuthile. Kungenzeka ukuthi inhlanganisela yokwelashwa izodingeka, engafaka:

• ukuzivocavoca kanye nokwelashwa ngokomzimba
• ukwesekwa kokudla okunomsoco ngomlomo noma IV
• imithi yokususa amafinyila emaphashini
• bronchodilators
• ama-corticosteroids
• izidakamizwa zokunciphisa ama-acid esiswini
• ama-antibiotic omlomo noma ahogelwayo
• ama-enzyme epancreatic
• insulini

Ama-modulators we-CFTR aphakathi kwemithi emisha ekhomba ukukhubazeka kofuzo.

Kulezi zinsuku, abantu abaningi abane-cystic fibrosis bathola ukufakelwa kwamaphaphu. E-United States, abantu abangama-202 abanalesi sifo bafakelwa amaphaphu ngo-2014. Ngenkathi ukufakelwa kwamaphaphu kungelona ikhambi, kungathuthukisa impilo futhi kwandise isikhathi sokuphila. Umuntu oyedwa kwabayisithupha abane-cystic fibrosis abaneminyaka engaphezu kwengu-40 baye bafakelwa amaphaphu.

Kuvame kangakanani i-cystic fibrosis?

Emhlabeni jikelele, abantu abangama-70,000 kuya ku-100,000 bane-cystic fibrosis.

E-United States, cishe abantu abangama-30,000 baphila nayo. Unyaka ngamunye odokotela bathola amanye amacala ayi-1 000.

Kuvame kakhulu kubantu bohlanga olusenyakatho neYurophu kunezinye izinhlanga. Kwenzeka kanye kuzo zonke izingane ezisanda kuzalwa ezingama-2 500 kuya ku-3 500. Kubantu abaMnyama, isilinganiso sinye kwabangu-17,000 kanti kwabase-Asia baseMelika, sinye kwabangu-31,000.

Kulinganiselwa ukuthi cishe umuntu oyedwa kwabangu-31 e-United States uphethe isakhi sofuzo esingalungile. Iningi alazi futhi lizohlala linjalo ngaphandle kokuthi ilungu lomndeni litholwe line-cystic fibrosis

ECanada cishe ingane eyodwa kwezingu-3 600 ezisanda kuzalwa inalesi sifo. ICystic fibrosis ithinta izingane ezisanda kuzalwa e-European Union kanye nengane eyodwa ezinganeni ezingama-2 500 ezizalwe e-Australia.

Lesi sifo asivamile e-Asia. Lesi sifo kungenzeka singatholakali kalula futhi singabikwa kahle kwezinye izingxenye zomhlaba.

Abesilisa nabesifazane bathinteka cishe ngesilinganiso esifanayo.

Ziyini izimpawu nobunzima?

Uma une-cystic fibrosis, ulahlekelwa usawoti omningi ngenxa yamafinyila nomjuluko wakho, yingakho isikhumba sakho singanambitha usawoti. Ukulahleka kasawoti kungadala ukungalingani kwamaminerali egazini lakho, okungaholela ku:

• isigqi senhliziyo esingajwayelekile
• umfutho wegazi ophansi
• ukushaqeka

Inkinga enkulu ukuthi kunzima emaphashini ukuthi ahlale engenawo amafinyila. Iyakha futhi ivale amaphaphu nezindawo zokuphefumula. Ngaphezu kokwenza kube nzima ukuphefumula, kukhuthaza ukutheleleka kwamagciwane okuyithuba lokuthola ithuba lokubamba.

ICystic fibrosis nayo ithinta amanyikwe. Ukwakheka kwamafinyila lapho kuphazamisa ama-enzyme wokugaya ukudla, kwenze kube nzima ngomzimba ukucubungula ukudla futhi kumunce amavithamini nezinye izakhi zomzimba.

Izimpawu ze-cystic fibrosis zingafaka:

• iminwe nezinzwane ezinamaqhuqhuva
• ukuphefumula noma ukuphefumula okuncane
• izifo zesinus noma ama-polyp acinene
• ukukhwehlela okuthi kwesinye isikhathi kukhiqize i-phlegm noma kuqukethe igazi
• ukuwa kwamaphaphu ngenxa yokukhwehlela okungapheli
• ukutheleleka okuphindaphindiwe kwamaphaphu okufana ne-bronchitis ne-pneumonia
• ukungondleki kanye nokushoda kwamavithamini
• ukukhula okungekuhle
• okunamafutha, indle enkulu
• ukungazali kwabesilisa
• isifo sikashukela esihlobene ne-cystic fibrosis
• isifo sokuqaqamba kwamalunga
• amatshe enyongo
• isifo sesibindi

Ngokuhamba kwesikhathi, njengoba amaphaphu eqhubeka nokuwohloka, kungaholela ekuhlulekeni ukuphefumula.

Ukuphila ne-cystic fibrosis

Alikho ikhambi elaziwayo le-cystic fibrosis. Kuyisifo esidinga ukuqapha ngokucophelela nokwelashwa impilo yonke. Ukwelashwa kwalesi sifo kudinga ukubambisana okusondelene nodokotela wakho nabanye abaseqenjini lakho lokunakekelwa kwezempilo.

Abantu abaqala ukwelashwa kusenesikhathi bavamise ukuba nekhwalithi ephezulu yempilo, kanye nempilo ende. E-United States, iningi labantu abane-cystic fibrosis litholakala ngaphambi kokufinyelela eminyakeni emibili. Iningi lezinsana manje selitholakala lapho zihlolwa ngemuva nje kokuzalwa kwazo.

Ukugcina imigudu yakho yomoya namaphaphu kukhanya amafinyila kungathatha amahora osukwini lwakho. Kukhona njalo ubungozi bezinkinga ezinkulu, ngakho-ke kubalulekile ukuzama ukugwema amagciwane. Lokho kusho nokuthi ungahlangani nabanye abane-cystic fibrosis. Amagciwane ahlukile avela emaphashini akho anganidalela nobabili izinkinga zezempilo.

Ngakho konke lokhu kuthuthukiswa kwezempilo, abantu abane-cystic fibrosis baphila impilo enempilo futhi ende.

Ezinye izindlela eziqhubekayo zocwaningo zifaka ukwelashwa kofuzo kanye nemithi yokwelapha enganciphisa noma imise ukuqhubeka kwesifo.

Ngo-2014, ngaphezu kwesigamu sabantu abafakwe kwi-cystic fibrosis isiguli sokubhalisa babeneminyaka engaphezu kwengu-18. Ososayensi nodokotela basebenza kanzima ukugcina lo mkhuba omuhle uqhubeka.