Lithini ixesha lokulindelwa ebomini kwabantu abaneCystic Fibrosis?

Umxholo

• Yintoni icystic fibrosis?
• Lithini ixesha lokuphila?
• Inyangwa njani?
• Ixhaphake kangakanani icystic fibrosis?
• Zithini iimpawu kunye nobunzima?
• Ukuhlala necystic fibrosis

Yintoni icystic fibrosis?

ICystic fibrosis yimeko engapheliyo ebangela ukosuleleka kwemiphunga rhoqo kwaye yenza ukuba kube nzima ukuphefumla. Kubangelwa sisiphene kuhlobo lweCFTR. Ukungaqhelekanga kuchaphazela amadlala avelisa intsholongwane nokubila. Uninzi lweempawu zichaphazela iinkqubo zokuphefumla kunye nokwetyisa.

Abanye abantu baphatha i-gene engalunganga, kodwa ungaze uphuhlise i-cystic fibrosis. Unokusifumana esi sifo kuphela xa usifumana ilifa lemfuza enesiphene kubazali bobabini.

Xa abathwali ababini benomntwana, kukho kuphela iipesenti ezingama-25 zamathuba okuba umntwana ahlakulele i-cystic fibrosis. Kukho ithuba leepesenti ezingama-50 lokuba umntwana abe ngumntu ophetheyo, kunye nepesenti ezingama-25 zokuba umntwana angayi kulidla ilifa olo tshintsho nakanye.

Zininzi iinguqulelo ezahlukeneyo kuhlobo lweCFTR, ke iimpawu kunye nokuba qatha kwesi sifo kuyahluka kuye komnye umntu.

Qhubeka ufunda ukuze ufunde ngakumbi malunga nokuba ngubani osemngciphekweni, iindlela zonyango eziphuculweyo, kwaye kutheni abantu abane-cystic fibrosis bephila ixesha elide kunangaphambili.

Lithini ixesha lokuphila?

Kwiminyaka yakutshanje, kuye kwakho inkqubela phambili kunyango olufumanekayo kubantu abane-cystic fibrosis. Ngokubanzi ngenxa yolu nyango luphuculweyo, ixesha lokuphila kwabantu abane-cystic fibrosis beliphucuka ngokuthe chu kule minyaka ingama-25 idlulileyo. Kuphela nje kumashumi ambalwa eminyaka eyadlulayo, uninzi lwabantwana abane-cystic fibrosis khange baphile ebudaleni.

E-United States nase-United Kingdom namhlanje, ixesha eliphakathi lokuphila lingama-35 ukuya kuma-40 eminyaka. Abanye abantu baphila ngaphaya koko.

Ubomi obulindelweyo buphantsi kakhulu kumazwe athile, kubandakanya i-El Salvador, i-India kunye ne-Bulgaria, apho ingaphantsi kweminyaka eyi-15.

Inyangwa njani?

Kukho inani leendlela kunye nonyango olusetyenziselwa ukunyanga i-cystic fibrosis. Injongo enye ebalulekileyo kukukhulula i-mucus kunye nokugcina i-airways icacile. Olunye usukelo kukuphucula ukufakwa kwezondlo.

Kuba kukho iimpawu ezahlukeneyo kunye nokuba qatha kweempawu, unyango lwahlukile kumntu ngamnye. Ukhetho lwakho lonyango luxhomekeke kubudala bakho, nakuphi na ukubanzima, kunye nendlela ophendula ngayo kunyango oluthile. Kungenzeka ukuba indibaniselwano yonyango iya kufuneka, enokubandakanya:

• umthambo kunye nonyango lomzimba
• ukuncediswa ngomlomo okanye nge-IV
• amayeza okususa i-mucus kwimiphunga
• bronchodilators
• icorticosteroids
• iziyobisi ukunciphisa iasidi esiswini
• ngomlomo okanye inhaled intsholongwane
• ii-enzymes zepancreatic
• insulin

Iimodyuli ze-CFTR ziphakathi konyango olutsha olujolise kwisiphene semfuza.

Kule mihla, abantu abaninzi abane-cystic fibrosis bafumana ukufakelwa kwemiphunga. E-United States, abantu abangama-202 abanesifo babenokufakelwa imiphunga ngo-2014. Ngelixa ukufakelwa kwemiphunga kungesilo unyango, kunokuyiphucula impilo kuze kwandise ubomi. Umntu omnye kwabathandathu abane-cystic fibrosis abangaphezulu kweminyaka engama-40 baye bafakelwa imiphunga.

Ixhaphake kangakanani icystic fibrosis?

Ehlabathini lonke, abantu abangama-70,000 ukuya kuma-100,000 bane-cystic fibrosis.

E-United States, malunga ne-30,000 yabantu bahlala nayo. Unyaka ngamnye oogqirha bafumanisa ezinye iimeko ezili-1 000.

Kuqheleke kakhulu kubantu abavela kumantla eYurophu kunakwamanye amaqela eentlanga. Kwenzeka kube kanye kwi-2,500 ukuya kwi-3,500 yeentsana ezisanda kuzalwa. Phakathi kwabantu abaMnyama, inqanaba linye kwi-17,000 nakwi-Asia yaseMelika, yenye kuma-31,000.

Kuqikelelwa ukuba malunga nomntu omnye kwabangama-31 eUnited States uphethe ufuzo olungalunganga. Uninzi alwazi kwaye luya kuhlala lukhona ngaphandle kokuba ilungu losapho lifunyenwe line-cystic fibrosis

ECanada malunga nelinye kwiintsana ezingama-3 600 ezinesi sifo. ICystic fibrosis ichaphazela iintsana ezisandula ukuzalwa kwi-European Union kunye nanye kwiintsana ezingama-2 500 ezelwe e-Australia.

Esi sifo sinqabile eAsia. Esi sifo sinokungafunyaniswa kakuhle kwaye sichazwe kancinci kwezinye iindawo zehlabathi.

Amadoda nabasetyhini bayachaphazeleka kwinqanaba elifanayo.

Zithini iimpawu kunye nobunzima?

Ukuba une-cystic fibrosis, uphulukana netyuwa eninzi ngokusebenzisa inwebu yakho kunye nokubila, yiyo loo nto ulusu lwakho lunokungcamla ityuwa. Ukuphulukana netyuwa kunokudala ukungalingani kwezimbiwa egazini lakho, oko kunokukhokelela ku:

• isingqisho sentliziyo esingaqhelekanga
• uxinzelelo lwegazi oluphantsi
• ukothuka

Ingxaki enkulu kukuba kunzima kwimiphunga ukuba ihlale icacile kwi-mucus. Iyakha kwaye ivale imiphunga kunye neendlela zokuphefumla. Ukongeza ekwenzeni kubenzima ukuphefumla, ikhuthaza usulelo olungenelelayo lwebacteria ukuba lubambe.

ICystic fibrosis ichaphazela nepancreas. Ukuqokelelwa kwencindi apho kuphazamisa ii-enzymes zesisu, kusenza kube nzima kumzimba ukwenza ukutya kunye nokufunxa iivithamini kunye nezinye izakha mzimba.

Iimpawu ze-cystic fibrosis zingabandakanya:

• iminwe kunye neenzwane
• ukuvutha okanye ukuphefumla okufutshane
• isifo sesono okanye iipolyps zempumlo
• ukukhwehlela ngamanye amaxesha kuvelisa iphlegm okanye kunegazi
• ukuwa kwemiphunga ngenxa yokukhohlela okungapheliyo
• ukosuleleka kwemiphunga okufana ne-bronchitis kunye nenyumoniya
• ukungondleki kunye nokuswela iivithamini
• ukukhula kakubi
• izitya ezinamafutha, ezinobunzima
• ukungachumi emadodeni
• isifo seswekile esinxulumene ne-cystic fibrosis
• ukudumba komzimba
• ngamatye enyongo
• isifo sesibindi

Ixesha elingaphezulu, njengoko imiphunga iqhubeka ukonakala, inokukhokelela ekusileleni kokuphefumla.

Ukuhlala necystic fibrosis

Akukho lunyango luyaziwayo lwe-cystic fibrosis. Sisifo esidinga ukujonga ngononophelo kunye nonyango lobomi bonke. Unyango lwesi sifo lufuna ubudlelwane obusondeleyo nogqirha wakho kunye nabanye kwiqela lakho lokhathalelo lwempilo.

Abantu abaqala unyango kwangoko bathambekele ekubeni nomgangatho wobomi ophezulu, kunye nobomi obude. EUnited States, uninzi lwabantu abane-cystic fibrosis bayafunyaniswa ngaphambi kokufikelela kwiminyaka emibini. Uninzi lweentsana ngoku lufunyaniswa xa luvavanywa kwakamsinya emva kokuba luzelwe.

Ukugcina iindlela zakho zomoya kunye nemiphunga icacile kwi-mucus kunokuthatha iiyure ngaphandle kosuku lwakho. Kuhlala kukho umngcipheko weengxaki ezinzulu, ngoko kubalulekile ukuzama ukunqanda iintsholongwane. Oko kuthetha ukuba ungadibani nabanye abane-cystic fibrosis. Iibhaktheriya ezahlukeneyo kwimiphunga yakho zinokubangela imicimbi yezempilo nobabini nobabini.

Ngalo lonke olu phuculo kukhathalelo lwempilo, abantu abane-cystic fibrosis baphila ubomi obusempilweni kunye nobude obude.

Ezinye iindlela eziqhubekayo zophando zibandakanya unyango lwemfuza kunye neerejimeni zamachiza ezinokucothisa okanye zokumisa ukuqhubela phambili kwesifo.

Ngo-2014, ngaphezulu kwesiqingatha sabantu ababandakanyiweyo kwirejista yesigulana se-cystic fibrosis babengaphezu kweminyaka eli-18. Inzululwazi kunye noogqirha basebenza nzima ukugcina imeko elungileyo iqhubeka.