Masifunde ngovavanyo lokubila ukuze sibone ukuba unayo na i-cystic fibrosis.

Ngaba umntwana wakho omncinci ngamanye amaxesha unengxaki yokuphefumla, okanye ingxaki yokungatyebi? Okanye ngaba uqaphela into efana nokukhwehlela okungapheliyo okanye isandi sokuphefumla esifubeni? Ngamanye amaxesha, emva kwezi zinto, kunokubakho isifo esingazivanga kangako ngaso, kodwa kubaluleke kakhulu ukuba siqaphele. Yiloo nto siza kuthetha ngayo namhlanje. Oku kubizwa ngokuba yiCystic Fibrosis , ngamanye amaxesha kufinyezwa ngokuthi (CF) . Makhe sibone ukuba yintoni, ifunyaniswa njani, kwaye ngakumbi iinkcukacha ezithile malunga 'noVavanyo lokuKhuza' olwenziwayo koku.

Yintoni kanye kanye iCystic Fibrosis?

Ngamafutshane, i-cystic fibrosis sisifo esizuzwe njengelifa . Oko kukuthi, yinto enokudluliselwa kubazali ukuya ebantwaneni. Okwenzekayo koku kukuba ezinye zezinto ezingaphakathi emizimbeni yethu, ingakumbi i-mucus, ziba nkulu kwaye zinamathele. Cinga ngayo, ingaba i-mucus emiphungeni nakwi-sinuses yomntu ophilileyo ayityibiliki njengamanzi? Yiyo egcina iindlela zethu zomoya zicocekile kwaye isusa iintsholongwane.

Kodwa kubantu abane-cystic fibrosis, le mucus ityebile kakhulu, njengeglue. Ngoko ke le mucus ityebileyo ifakwa kwizitho ezibalulekileyo ezifana nemiphunga kunye nepancreas , iphazamisana nokusebenza kwazo okuqhelekileyo. Ingakumbi xa le mucus ityebileyo iqokelelana emiphungeni, iindlela zomoya ziqala ukuvaleka. Emva koko kuba nzima kakhulu ukuphefumla, kwaye usulelo lunokwenzeka rhoqo. Ukuba ipancreas ichaphazelekile, iingxaki zokugaya ukutya kunye nokungondleki zinokwenzeka. Ayipheleli nje koku, inokuchaphazela neendawo ezifana nesibindi, amathumbu, kunye nezitho zangasese.

I-Cystic fibrosis sisifo esingapheliyo . Oku kuthetha ukuba sihlala ixesha elide kwaye asinakunyangwa ngokupheleleyo. Sikwathathwa njengesifo esiqhubekayo . Oku kuthetha ukuba iimpawu zinokuba mandundu ngokuhamba kwexesha kwaye iingxaki zinokubakho. Yiyo loo nto kubaluleke kakhulu ukuyiqonda kwangethuba kwaye uyilawule ngokufanelekileyo.

Zithini iimpawu zoku ebantwaneni?

Ukuba umntwana omncinci, ingakumbi usana, une-cystic fibrosis, unokufumana enye okanye ngaphezulu kwezi mpawu. Ayingomntwana ngamnye oza kuba nazo zonke ezi mpawu ngaxeshanye, kwaye ubukhali beempawu bunokwahluka kumntwana ngamnye. Kubalulekile ukukhumbula oko.

Nazi ezinye zezo mpawu:

• Ukungaphumeleli ukukhula: Nangona umntwana encancisa kakuhle kwaye etya kakuhle kamva, usenokungatyebi kwaye abonakale etyebile kancinci xa ethelekiswa nezinye iintsana ezineminyaka efanayo.
• Indle ekhululekileyo okanye enamafutha: Ngamanye amaxesha indle yomntwana wakho inokuba nkulu kakhulu, ibe namanzi, okanye ibe namafutha. Ngamanye amaxesha indle inokuba nevumba elibi.
• Ubunzima bokuphefumla:Ndisoloko ndiziva ngathi kunzima ukuphefumla, ngathi uyafuthanisela.
• Ukuphefumla okungapheliyo: Isandi sokuphefumla esingapheliyo esiphuma esifubeni. Oku kunokwenzeka nakwiimeko ezifana ne-asthma, kodwa luphawu oluqhelekileyo kwi-CF.
• Usulelo oluqhelekileyo lwemiphunga: Umzekelo, i-pneumonia kunye ne-bronchitis zixhaphakile. Ukuba ufumana usulelo lwemiphunga kube kanye okanye kabini ngenyanga, yinto ekufuneka uyixhalabele.
• Usulelo oluphindaphindeneyo lwe-sinus: Usulelo oluxhaphakileyo kwimingxuma ejikeleze impumlo (ii-sinus). Iimpawu ziquka impumlo exineneyo, impumlo evuzayo, kunye nempumlo exineneyo.
• Ukukhwehlela okungapheliyo, mhlawumbi okubangela ukurhawuzelela: Ukukhwehlela okungapheliyo okungapheliyo. Kusenokuba kukukhwehlela okuvelisa ulwelwesi olujiyileyo.
• Ukukhula kancinci: Ukuphakama nobunzima bomntwana kubonakala ngathi kukhula kancinci xa kuthelekiswa nabanye abantwana abaneminyaka efanayo.
• Ngamanye amaxesha ulusu lomntwana lunencasa yetyuwa: Abanye abazali baxela ukuba xa behlikihla ulusu lomntwana wabo olubilayo, luvakala lunetyuwa.

Ukuba ukrokrela ukuba umntwana wakho omncinci unenye okanye ngaphezulu kwezi mpawu, eyona nto ingcono onokuyenza kukubona ugqirha wabantwana ukuze akunike ingcebiso.

Yintoni uvavanyo lokubila kwaye lwenza ntoni?

Oogqirha baxilonga i-cystic fibrosis ngokuxilonga isigulane ngononophelo, bemamela iimpawu zaso, baze benze uvavanyo olwahlukeneyo. Oku kuquka uvavanyo lwemfuza - oluvavanyo lwegazi olujonga utshintsho kwimfuza - i-X-ray yesifuba kunye ne-sinus, kunye novavanyo lomsebenzi wemiphunga.

Nangona kunjalo, uvavanyo olubaluleke kakhulu nolucacileyo lokuqinisekisa ukuba une-cystic fibrosis okanye akunjalo luvavanyo lokubila. Olu luvavanyo olulula kakhulu, olungenabuhlungu. Lulinganisa ubungakanani be -chloride ekubileni kwakho. Ubusazi na ukuba ityuwa esiyityayo yenziwe ngeekhemikhali ezimbini ezibizwa ngokuba yi-chloride kunye ne-sodium. Ngoko ke, ubungakanani be-chloride ekubileni kwabantu abane-cystic fibrosis buphezulu kakhulu kunobomntu oqhelekileyo.

Isizathu soku kukuba, ngenxa yesiphene semfuza esibangela i-cystic fibrosis, umsebenzi weproteni enceda i-chloride ukuba ihambe kwiiseli zethu uyaphazamiseka. Ngenxa yoko, i-chloride ayinakungena okanye iphume kwiiseli ngokufanelekileyo. Oku kwenzeka xa i-chloride iqokelelana ngokungaqhelekanga ekubileni. Nangona kunokubonakala kulula kakhulu, esi sisiseko sesayensi esisisiseko sokuxilonga esi sifo.

Ngokwesiqhelo, oogqirha bacebisa olu vavanyo lokubila ukuba umntwana usemngciphekweni wokufumana i-cystic fibrosis (umzekelo, ukuba kukho umntu kusapho lwakhe onesifo), okanye ukuba ubonakalisa iimpawu esizixubushileyo ngaphambili. Ngamanye amaxesha, abantakwabo mntwana nabo bayacelwa ukuba benze olu vavanyo. Oku kukujonga ukuba nabo bayifumene na le gene kwaye nokuba abantwana babo basemngciphekweni wokufumana le gene kwixesha elizayo.

Olu vavanyo lokubila lwenziwa njani? Ngaba yinto yokoyika?

Olu vavanyo lokubila lunokwenziwa nakubani na wanoma yiphi na iminyaka. Nangona kunjalo, iintsana ezisandul’ ukuzalwa zisenokungakwazi ukuvelisa ukubila okwaneleyo kolu vavanyo kwiintsuku zokuqala zobomi bazo. Ke ngoko, olu vavanyo ludla ngokwenziwa kwiintsana eziphakathi kweeveki ezimbini ukuya kwezine ubudala , xa zinokuvelisa ukubila okwaneleyo.

Olu vavanyo lulula kakhulu ukulwenza, kwaye alunabuhlungu konke konke. Ngoko ke musa ukuloyika, kulungile? Nantsi into eyenzekayo:

1. Okokuqala, umsebenzi wezempilo, nokuba ngumongikazi okanye ugqirha, ufaka ijeli okanye ulwelo olunekhemikhali ebizwa ngokuba yi-pilocarpine eluswini lwengalo yomntwana (ngokuqhelekileyo ingalo) okanye umlenze. I-Pilocarpine liyeza elivuselela amadlala okubila.

2. Emva koko, kubekwa ii-electrode ezimbini kuloo ndawo kwaye kunikwa ukuvuselelwa kombane okuncinci kakhulu, okungenabungozi ukuze kukhuthazwe ngakumbi amadlala okubila nokuvelisa ukubila. Oku kwenziwa malunga nemizuzu emi-5. Akukho kuhlaba okanye intlungu konke konke. Umntwana omncinci usenokuva ukurhawuzelela okanye ukufudumala esandleni okanye ezinyaweni zakhe, kodwa kuphelele apho. Uninzi lweentsana aluziva nokuziva oku.

3. Emva koko, ii-electrode ziyasuswa, indawo yesikhumba iyacocwa, kwaye kufakwa isixhobo esikhethekileyo sokuqokelela umbilo (nokuba yi-coil yeplastiki, iphepha lesihluzo, okanye iqhekeza le-gauze) kuloo ndawo. Oku kushiywa endaweni kangangemizuzu engama-30 ukuze kuqokelelwe umbilo.

4. Okokugqibela, le sampuli yokubila eqokelelweyo ithunyelwa kwilebhu ukuze kulinganiswe ngokuchanekileyo ubungakanani be-chloride ekhoyo.

Lonke uvavanyo luthatha malunga neyure. Kulula ukugcina umntwana wakho ezolile ukuba unethoyi okanye ibhotile yobisi kufutshane.

Zithini iziphumo zolu vavanyo?

Kulungile, ngoku makhe sibone ukuba iziphumo zolu vavanyo lokubila zithini. Ukuba umntwana une-cystic fibrosis, uvavanyo lokubila luya kubonisa ukuba kukho inani eliphezulu kunelesiqhelo le-chloride ekubileni kwakhe.

Ngokuphathelele amaxabiso alinganisiweyo, la ngala alandelayo (la maxabiso anokwahluka kancinci kwilabhoratri nganye, kodwa ngokubanzi anje ngolu hlobo):

• Ukuba inqanaba le-chloride lomntwana wakho liphezulu kune-60 mmol/L (millimol/ilitha) : Kusenokwenzeka ukuba une-cystic fibrosis.Ngokwesiqhelo, ukuba kuvela iziphumo ezinje, uvavanyo luyenziwa kwakhona ukuqinisekisa.
• Inqanaba le-chloride yomntwana lingaphantsi kwe-30 mmol/L (millimol/litha) (ezinye izikhokelo zithi lingaphantsi kwe-40 mmol/L): Kunokuthiwa akanayo i-cystic fibrosis.
• Ukuba inqanaba le-chloride lomntwana wakho liphakathi kwama-30 nama-59 mmol/L ( kwezinye iindawo i-40-59 mmol/L): Oku kuthathwa njengesiphumo esiphakathi okanye esisemdeni . Kule meko, uvavanyo lunokufuneka luphindwe . Uvavanyo olongezelelweyo, olufana novavanyo lwemfuza, lunokufuneka kwakhona ukuze kuthintelwe ezinye iintlobo ze-CF ezingaqhelekanga.

Eyona nto ibalulekileyo kukuba ezi ziphumo mazitolikwe ngugqirha. Ngoko ke, xa iziphumo zifika, eyona nto ingcono onokuyenza kukuthetha nogqirha ngayo uze ulandele imiyalelo yakhe. Musa ukoyika.

Ulungiselela njani umntwana wakho uvavanyo lokubila? Ngaba kukho into ebalulekileyo ekufuneka uyenze?

Oku kulula kakhulu kumama nakutata. Akunyanzelekanga ukuba wenze nantoni na ekhethekileyo ukulungiselela umntwana wakho uvavanyo lokubila.

• Akukho mfuneko yokutshintsha okanye ukuyeka ukutya komntwana (indlela yokutya, ukutya okuqinileyo ukuba uyanikwa), imisebenzi, okanye amayeza umntwana awasebenzisayo ngaphambi kolu vavanyo. Gcina oku kuqhelekile.
• Eyona nto ibalulekileyo kukuba, musa ukuthambisa naluphi na ukhilimu okanye iiloshini eluswini lomntwana wakho iiyure ezingama-24 ngaphambi kovavanyo. Ingakumbi musa ukuthambisa nantoni na engalweni okanye emlenzeni ovavanywayo. Oku kunokuchaphazela iziphumo zovavanyo.

Uyabona, kulula kakhulu. Nxibisa umntwana wakho impahla ekhaphukhaphu nekhululekileyo ngomhla wovavanyo.

Ezona zinto zibalulekileyo ekufuneka sizikhumbule kweli bali (Umyalezo Wokuya Ekhaya)

Kulungile, ndiyathemba ukuba ngoku uyaqonda kakuhle into esithethe ngayo namhlanje, iCystic Fibrosis kunye noVavanyo lokuSweat. Nangona oku kungabonakala ngathi yingongoma enzima, akunzima kangako xa sele uqonda iziseko. Ukusuka koko sikuthethileyo, nazi izinto ekufuneka uzikhumbule:

• I-Cystic fibrosis (CF) sisifo semfuza esibangela ukuba i-mucus yomzimba ijiye, ingakumbi echaphazela imiphunga kunye nenkqubo yokugaya ukutya.
• Lumka ngeempawu: Ukuba unempawu enye okanye ezingaphezulu kwezi, ezinje ngokuncipha komzimba, ukuphefumla kancinci rhoqo, ukukhohlela okungapheliyo, okanye isitulo esinamafutha, bona ugqirha uze uxoxe ngazo.
• Uvavanyo lokubila lolona vavanyo luphambili noluthembekileyo lokuqinisekisa i-cystic fibrosis: lulinganisa inqanaba le-chloride ekubileni.
• Olu vavanyo alubuhlungu kwaye lukhuselekile: ngoko ungoyiki ukumsa umntwana wakho kule meko.
• Kubaluleke kakhulu ukuqaphela esi sifo kwangethuba:Kuba ke ngoko, iindlela zonyango ezifunekayo kunye neendlela zokulawula zinokuqalwa ngokukhawuleza, zinciphise iingxaki umntwana anokuhlangabezana nazo kwaye zimncede aphile ubomi obungcono nobunempilo.

Ukuba wena okanye umntu omaziyo unengxaki, eyona nto ingcono onokuyenza kukungaxhalabi okanye ukukholelwa kuyo yonke into oyifumana kwi-intanethi, kodwa kukuthetha nogqirha ofanelekileyo. Baza kukukhokela ngokufanelekileyo baze bakunike inkxaso oyifunayo.

I- Cystic Fibrosis, uvavanyo lokubila, i-chloride, unyango lwabantwana, izifo zemfuza, izifo zemiphunga