Kodi mwana wanu amakhala ndi mphuno yotsekeka nthawi zonse? Kaya akupereka chakudya chochuluka bwanji, amachepa thupi osazindikira? Kodi nthawi zina zimamveka ngati akuvutika kupuma? Ndizachilendo kuti makolo azichita mantha akaona zizindikirozi. Izi zitha kukhala zizindikiro za matenda otchedwa Cystic Fibrosis (CF), omwe mwina sitinamvepo zambiri, koma ndikofunikira kwambiri kudziwa. Tiyeni tikambirane izi popanda mantha komanso lero.
Kodi cystic fibrosis (CF) kwenikweni ndi chiyani?
Mwachidule, uwu ndi matenda a majini omwe amabadwa nawo kuchokera kwa makolo . Pali jini yapadera yomwe imalamulira kayendedwe ka mchere (chloride) ndi madzi kudzera m'maselo a thupi lathu. Imeneyi imatchedwa jini ya CFTR (cystic fibrosis transmembrane conductance regulator) . Chifukwa chake, matenda a CF amapezeka pakakhala cholakwika kapena kusintha kwa majini awa.
Kodi chimachitika ndi chiyani chifukwa cha vutoli? Nthawi zambiri, zinthu zotuluka m'thupi mwathu monga mamina ndi mafinya zimakhala zopyapyala komanso zoterera. Koma m'thupi la munthu amene ali ndi matenda a shuga, zinthu zotuluka m'thupi zimenezi zimakhala zokhuthala kwambiri, zokhuthala, komanso zomata .
Tangoganizirani zomwe zimachitika pamene mamina okhuthalawa akuunjikana m'mapapo. Zimavuta kupuma, majeremusi amagwidwa mosavuta , ndipo matenda amafalikira kwambiri . Pakapita nthawi, izi zingayambitse kuwonongeka kwakukulu kwa mapapo, kulephera kupuma, komanso imfa.
Komanso, madzi okhuthala amenewa amatseka misempha ya kapamba. Kenako ma enzyme ogaya chakudya omwe amathandiza kugaya chakudya chomwe timadya satulutsidwa . Zotsatira zake, kusowa zakudya m'thupi komanso kukula movutikira kumachitika. Kuphatikiza apo, matenda a chiwindi, matenda a shuga (`Cystic Fibrosis-Related Diabetes` - CFRD) ndi mavuto okhudzana ndi kubereka amathanso kuchitika.
Koma musadandaule. Masiku ano, chifukwa cha chithandizo chapamwamba, nthawi yoyembekezera moyo wa odwala matenda a CF yawonjezeka ndi zaka zambiri.
Kodi zizindikiro za matendawa ndi ziti?
Zizindikiro za CF zimatha kusiyana malinga ndi munthu ndi munthu. Zimasiyananso malinga ndi kuopsa kwa matendawa. Tiyeni tiwone zizindikiro zazikulu.
| Dongosolo/chiwalo chokhudzidwa | Zizindikiro zodziwika bwino |
|---|---|
| Mapapo (mapapo) |
|
| Dongosolo la m'mimba | |
| Zina mwazinthu |
Matenda achilendo a cystic fibrosis
Uwu ndi mtundu wochepa wa matenda a CF. Zizindikiro zimaonekera pakapita nthawi. Nthawi zina chiwalo chimodzi chokha chimakhudzidwa.
Kodi chimayambitsa CF ndi chiyani?
Monga tafotokozera kale, izi zimachitika chifukwa cha vuto la jini yotchedwa CFTR . Kuti mwana adwale matendawa, ayenera kulandira kopi ya jini yolakwikayo kuchokera kwa mayi ndi bambo .
Tangoganizani kuti makolo onse awiri ndi omwe ali ndi jini yolakwika iyi. Wonyamulayo amatanthauza kuti alibe zizindikiro, koma ali ndi kopi imodzi ya jini yolakwika m'thupi lawo. Nthawi iliyonse makolo awiri otere amakhala ndi mwana, pali mwayi wa 25% (mmodzi mwa anayi) kuti mwanayo akhale ndi CF.
Kodi matendawa amapezeka bwanji?
Ndikofunikira kwambiri kuzindikira matendawa msanga, chifukwa chithandizo chingayambe msanga ndipo mavuto omwe angakhalepo mtsogolo angachepe. Ku Sri Lanka, zipatala zina tsopano zikuyesa ana akangobadwa.
Mayeso akuluakulu omwe amagwiritsidwa ntchito pozindikira matendawa ndi awa:
- Kuyesa thukuta: Iyi ndi njira yodalirika kwambiri yodziwira matenda a CF.Kuyeza kumeneku kosapweteka kumayesa kuchuluka kwa mchere (chloride) mu thukuta lanu. Ngati kuchuluka kwake kuli kwakukulu kuposa kwachizolowezi, ndi chizindikiro cha CF.
- Kuyeza magazi: Izi zimayesa kuchuluka kwa mankhwala otchedwa `Immunoreactive Trypsinogen (IRT)` m'magazi. Kuchuluka kumeneku kumakhala kwakukulu kwa odwala matenda a CF.
- Kuyesa majini (kuyesa DNA): Izi zimayang'ana mwachindunji zolakwika mu jini ya `CFTR`.
Kuwonjezera pa mayeso amenewa, dokotala wanu angakulangizeni mayeso ena kuti atsimikizire matendawa ndikuyang'ana mavuto. Mwachitsanzo, mayeso a chifuwa, mayeso a pulmonary function (PFTs), ndi mayeso a sputum ndi chopondapo.
Kodi mankhwala ake ndi otani?
Popeza matenda a CF ndi ovuta, chithandizo chimaperekedwa ndi gulu la akatswiri osiyanasiyana, kuphatikizapo katswiri wa mapapu, katswiri wa physiotherapist, ndi katswiri wa zakudya. Zolinga zazikulu za chithandizo ndi kuchotsa mamina m'mapapo, kupewa matenda, komanso kupereka zakudya zofunikira.
Mankhwala
Dokotala wanu angapereke mankhwala monga:
- Mankhwala opha tizilombo: Kuteteza ndi kuchiza matenda a m'mapapo.
- Mankhwala ochepetsa mafinya: Mankhwalawa amaperekedwa kudzera mu inhaler kapena nebulizer. Amathandiza kuchepetsa mafinya okhuthala komanso kupangitsa kuti kutsokomola kukhale kosavuta.
- Ma bronchodilator: Amakulitsa njira zopumira mpweya ndipo amapangitsa kupuma kukhala kosavuta.
- Zakudya zowonjezera za pancreatic enzyme: Izi ziyenera kumwedwa pa chakudya chilichonse komanso pa chakudya chopepuka. Zimathandiza kugaya chakudya komanso kuyamwa michere.
- Ma modulators a CFTR: Awa ndi mankhwala atsopano komanso ogwira mtima kwambiri. Mankhwalawa amathandiza kubwezeretsa ntchito ya puloteni yolakwika ya `CFTR` yomwe imayambitsa matendawa mwachindunji. Izi zitha kuonda mamina, kukonza magwiridwe antchito a mapapo, kuchepetsa chifuwa, komanso kuchepetsa kunenepa. `(Trikafta, Kalydeco, Orkambi)` ndi ena mwa mitundu iyi ya mankhwala.
Njira Zochotsera Ndege (ACT)
Izi ndi zinthu zomwe ziyenera kuchitika tsiku lililonse, osachepera kawiri patsiku. Zimathandiza kumasula ndi kuchotsa mamina okhuthala omwe amamatira m'mapapo.
- Kuchiza chifuwa: Munthu akugogoda kumbuyo ndi pachifuwa mozungulira kuti atulutse mamina.
- Vesti: Iyi ndi vesti yolumikizidwa ku makina apadera. Ikavalidwa, kugwedezeka kwamphamvu kumagunda pachifuwa, zomwe zimapangitsa kuti pakhale vuto ndikumasula mamina.
- Zipangizo za PEP: Kupuma mpweya kudzera mu zipangizo zazing'ono monga `(Flutter, Acapella)` kumabweretsa kupanikizika m'mapapo ndipo kumathandiza kuchotsa mamina.
Maopaleshoni
Mavuto ena angafunike opaleshoni.
- Kuika mapapo: Njira yomaliza pamene matendawa ndi oopsa kwambiri ndipo mapapo sakugwira ntchito bwino.
- Kusamutsa chiwindi: Ngati chiwindi chawonongeka kwambiri.
- Zina: Zinthu monga kuchotsa ma polyps a m'mphuno, kulowetsa chubu chodyetsera m'mimba kuti chipereke chakudya.
Mavuto omwe angakhalepo a CF
Ngati matenda a CF sachiritsidwa bwino, mavuto osiyanasiyana angachitike.
- Mapapu: Kufalikira kosatha kwa njira zopumira (`Bronchiectasis`), kugwa kwa mapapo (`Pneumothorax`), matenda osatha.
- Pancreatitis: Matenda a shuga okhudzana ndi CF (`CFRD`).
- Chiwindi: Kutupa kwa chiwindi (Cirrhosis).
- Matumbo: Kutsekeka kwa matumbo, chiopsezo chowonjezeka cha khansa ya m'matumbo.
- Kubereka: Kusabereka kwa amuna komanso kubereka mochedwa mwa akazi.
- Mafupa: Kuchepa kwa mafupa (Osteoporosis).
Mafunso Ofunsidwa Kawirikawiri (Mafunso Ofunsidwa Kawirikawiri)
Kodi moyo wa wodwala wa CF ndi wotani?
Zinthu masiku ano n’zosiyana kwambiri ndi zakale. Mankhwala amakono, makamaka `CFTR modulators`, athandiza kwambiri kuti odwala a CF akhale ndi moyo wabwino komanso kuti akhale ndi moyo wabwino. Kafukufuku wina akusonyeza kuti mwana wobadwa lero akhoza kukhala ndi moyo wa zaka 60-70 kapena kuposerapo.
Kodi odwala CF angakhale ndi moyo wabwinobwino?
Inde. Ngakhale kuti pali zovuta zokhudzana ndi chithandizo cha tsiku ndi tsiku komanso kutsatira malangizo a dokotala, anthu ambiri amakhala ndi moyo wabwinobwino. Amapita kusukulu, kuntchito, amakwatira, ndipo amakhala ndi mabanja.
Kodi chimachitika ndi chiyani ngati sichikuchiritsidwa?
Ngati sichichiritsidwa, chingayambitse matenda opatsirana m'mapapo mobwerezabwereza, kuvutika kupuma kwambiri, kusowa zakudya m'thupi, kutsekeka kwa matumbo, komanso imfa. Chifukwa chake, chithandizo ndi chofunikira .
Uthenga Wopita Nawo Kunyumba
- Cystic Fibrosis (CF) ndi matenda oopsa, koma otheka kuwathetsa.
- Ndikofunikira kwambiri kuzindikira matendawa msanga ndikupitiriza kulandira chithandizo tsiku ndi tsiku .
- Ngati mwana wanu ali ndi zizindikiro monga kutsekeka pachifuwa pafupipafupi, kulephera kunenepa, kapena thukuta lamchere kwambiri, pitani kwa dokotala nthawi yomweyo.
- Chifukwa cha mankhwala ndi njira zamakono zochiritsira, miyoyo ndi tsogolo la odwala matenda a CF zasintha kwambiri masiku ano.
- Lumikizanani ndi gulu lanu lachipatala ndipo tsatirani malangizo awo molondola.











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