Mwana wako mudiki anogara aine mhino yakavharika here? Pasinei nekuti anopa chikafu chakadini, anoonda asingatombozvizivi? Dzimwe nguva zvinonzwa sekunge ane dambudziko rekufema here? Zvakajairika kuti vabereki vatye pavanoona zviratidzo izvi. Izvi zvinogona kunge zviri zviratidzo zvechirwere chinonzi Cystic Fibrosis (CF), chatingave tisina kunzwa zvakawanda nezvacho, asi chakakosha kuziva. Ngatitaurei nezvazvo tisingatyi uye nhasi uno.
Chii chinonzi cystic fibrosis (CF)?
Zvichitaurwa zviri nyore, ichi chirwere chemajini chinotorwa kubva kuvabereki . Kune jini rakakosha rinodzora kufamba kwemunyu (chloride) nemvura kuburikidza nemasero emuviri wedu. Iri jini rinonzi CFTR (cystic fibrosis transmembrane conductance regulator) . Saka, chirwere cheCF chinoitika kana paine chikanganiso kana shanduko mujini iri.
Chii chinoitika nekuda kwekusakwana uku? Kazhinji, zvinhu zvinobuda mumuviri wedu, zvakaita semanyoka nematumbu , zvakatetepa uye zvinotsvedza. Asi mumuviri wemunhu ane CF, zvinhu izvi zvinobuda zvinokora, zvinokora, uye zvinonamira .
Fungidzira zvinoitika kana manyoka aya akakora aungana mumapapu. Zvinoita kuti zviome kufema, utachiona hunobatwa nyore nyore , uye hutachiona hunowedzera kuwanda . Nekufamba kwenguva, izvi zvinogona kukonzera kukuvara kwakanyanya kumapapu, kutadza kufema, uye kunyange kufa.
Uyewo, maburi aya akakora anovhara migero yepancreas. Zvadaro ma enzymes ekugaya anobatsira kugaya chikafu chatinodya haaburitswe . Nekuda kweizvozvo, kushaya chikafu chakakwana uye kukura kwakanonoka kunoitika. Pamusoro pezvo, zvirwere zvechiropa, chirwere cheshuga (`Cystic Fibrosis-Related Diabetes` - CFRD) uye matambudziko ekubereka zvinogonawo kuitika.
Asi musazvidya mwoyo. Nhasi uno, nekuda kwekurapwa kwepamusoro-soro, hupenyu hwevarwere vane CF hwawedzera nemakumi emakore.
Ndezvipi zviratidzo zvechirwere ichi?
Zviratidzo zveCF zvinogona kusiyana kubva pamunhu kuenda kune mumwe. Zvinosiyanawo zvichienderana nekuoma kwechirwere. Ngatitarisei zviratidzo zvikuru.
| Sisitimu/nhengo yakakanganiswa | Zviratidzo zvakajairika |
|---|---|
| Masisitimu ekufema (mapapu) |
|
| Sisitimu yekugaya chikafu | |
| Zvimwe zvinhu |
Atypical cystic fibrosis
Iyi imhando yeCF isina kunyanya kuipa. Zviratidzo zvinoonekwa pave paya. Dzimwe nguva nhengo imwe chete ndiyo inobatwa.
Chii chinokonzera CF?
Sezvatakambokurukura, izvi zvinokonzerwa nekusakwana kuri mujini rinonzi CFTR . Kuti mwana awane chirwere ichi, mwana anofanira kugamuchira kopi yejini risina kunaka kubva kuna amai nababa .
Fungidzira kuti vabereki vese vari vaviri 'vanotakura' jini iri risina kunaka. Chinotakurwa chinoreva kuti havana zviratidzo, asi vane kopi imwe chete yejini risina kunaka mumuviri wavo. Nguva imwe neimwe vabereki vaviri vakadaro vane mwana, pane mukana we25% (mumwe pavana) wekuti mwana achava neCF.
Chirwere ichi chinoonekwa sei?
Zvakakosha zvikuru kuona chirwere ichi nekukurumidza, nekuti ipapo kurapwa kunogona kutanga nekukurumidza uye matambudziko anogona kuitika mune ramangwana anogona kuderedzwa. MuSri Lanka, zvimwe zvipatara zviri kuyedza vana panguva yekuzvarwa.
Miedzo mikuru inoshandiswa kuongorora chirwere ichi ndeiyi:
- Kuongororwa kwedikita: Iyi ndiyo nzira yakavimbika yekuongorora CF.Kuyedzwa uku kusingarwadzi kunoyera huwandu hwemunyu (chloride) mudikita rako. Kana huwandu hwacho hwakakwira zvakanyanya kupfuura zvakajairika, chiratidzo cheCF.
- Kuongororwa kweropa: Izvi zvinoongorora huwandu hwekemikari inonzi `Immunoreactive Trypsinogen (IRT)` muropa. Huwandu uhwu hwakakwira muvarwere vane CF.
- Kuongororwa kwemajini (kuongororwa kweDNA): Izvi zvinotarisa zvakananga zvikanganiso zviri mujini re'CFTR'.
Pamusoro pemiedzo iyi, chiremba wako anogona kukurudzira mimwe miedzo yekusimbisa chirwere ichi uye kutsvaga matambudziko. Semuenzaniso, kuongororwa kweX-ray yechipfuva, bvunzo dzekushanda kwemapapu (PFTs), uye bvunzo dzemapumu netsvina.
Ndezvipi zviri kurapwa?
Nekuti chirwere cheCF chirwere chakaoma kunzwisisa, kurapwa kunopihwa nechikwata chenyanzvi dzakasiyana-siyana, kusanganisira chiremba wemapapu, nyanzvi yekurapa muviri, uye nyanzvi yezvekudya. Chinangwa chikuru chekurapa ndechekubvisa manyoka mumapapu, kudzivirira hutachiona, uye kupa chikafu chinodiwa.
Mishonga
Chiremba wako anogona kunyora mishonga yakaita seyiyi:
- Mishonga inorwisa mabhakitiriya: Kudzivirira nekurapa hutachiona hwemapapu.
- Mishonga inoomesa manyoka: Iyi inopihwa kuburikidza neinhaler kana nebulizer. Inobatsira kuomesa manyoka akakora uye inoita kuti zvive nyore kukosora.
- Zvinobvisa mabronchodilator: Zvinoita kuti nzira dzekufema dziwedzere uye zvinoita kuti kufema kuve nyore.
- Zvinowedzerwa muma enzyme epancreatic: Izvi zvinofanirwa kunwiwa panguva yekudya kwega kwega uye zvekudya zvemazuva ese. Zvinobatsira mukugaya chikafu uye kupinza zvinovaka muviri mumuviri.
- CFTR modulators: Iyi ndiyo mishonga mitsva uye inoshanda zvakanyanya. Mishonga iyi inobatsira kudzoreredza mashandiro eprotein ye 'CFTR' isina kunaka iyo inokonzera chirwere zvakananga. Izvi zvinogona kutetepa madzihwa, kunatsiridza mashandiro emapapu, kuderedza kukosora, uye kutoderedza uremu. `(Trikafta, Kalydeco, Orkambi)` ndedzimwe dzemhando idzi dzemishonga.
Maitiro Ekubvisa Nzira Dzemhepo (ACT)
Izvi zvinhu zvinofanira kuitwa zuva nezuva, kanenge kaviri pazuva. Zvinobatsira kusunungura nekubvisa madzihwa akakora anenge akabatwa mumapapu.
- Kurapa chipfuva: Kuva nemumwe munhu anorova musana nechipfuva zvine ruzha kuti abvise madzihwa.
- Vhesi: Iri ivhesi rakabatana nemuchina chaiwo. Kana rapfekwa, kutenderera kwemuviri kunobata chipfuva, zvichiita kuti pave nechinhu chinobuda uye mvura inobuda.
- Zvishandiso zvePEP: Kufema nemidziyo midiki yakaita se `(Flutter, Acapella)` kunoita kuti mapapu asundire uye kunobatsira kubvisa madzihwa.
Kuvhiya
Mamwe matambudziko angada kuvhiyiwa.
- Kuisirwa mapapu: Nzira yekupedzisira kana chirwere chacho chakanyanya kuipa uye mapapu acho asingachashande zvakanaka.
- Kuisirwa chiropa: Kana chiropa chakakuvara zvakanyanya.
- Zvimwe: Zvinhu zvakaita sekubvisa mhino, kuisa chubhu yekudyisa mudumbu kuti ipe chikafu.
Matambudziko anogona kuitika eCF
Kana chirwere cheCF chikasarapwa zvakanaka, matambudziko akasiyana-siyana anogona kuitika.
- Mapapu: Kupararira kwenzira dzekufema (`Bronchiectasis`), kudonha kwemapapu (`Pneumothorax`), hutachiona husingaperi.
- Pancreatitis: Chirwere cheshuga chinokonzerwa neCF (`CFRD`).
- Chiropa: Mavanga echiropa (Cirrhosis).
- Matumbu: Kuvharika kwedumbu, kuwedzera kwenjodzi yekubatwa nekenza yemuura.
- Kubereka: Kushaya mbereko kwevarume uye kunonoka kubereka kwevakadzi.
- Mapfupa: Kutetepa kwemapfupa (Osteoporosis).
Mibvunzo Inowanzo bvunzwa (Mibvunzo Inowanzo bvunzwa)
Murwere ane CF anotarisirwa kurarama kwenguva yakareba sei?
Mamiriro ezvinhu nhasi akasiyana zvikuru neakare. Mishonga yemazuva ano, kunyanya `CFTR modulators`, yakavandudza zvikuru nguva yekurarama uye mhando yehupenyu hwevarwere vane CF. Dzimwe ongororo dzinoratidza kuti mwana anozvarwa nhasi anogona kurarama kusvika pamakore 60-70 kana kutopfuura.
Varwere vane CF vanogona kurarama hupenyu hwakajairika here?
Ehe. Pasinei nematambudziko ekurapwa kwezuva nezuva uye kutevedzera mazano ekurapa, vanhu vazhinji vanorarama hupenyu hwakajairika. Vanoenda kuchikoro, vanoshanda, vanoroora, uye vane mhuri.
Chii chinoitika kana chikasarapwa?
Kana zvikasarapwa, zvinogona kukonzera hutachiona hwemapapu hunoramba huchidzoka, matambudziko ekufema zvakanyanya, kushaya chikafu chinovaka muviri, kuvharika kwematumbu, uye pakupedzisira rufu. Saka, kurapwa kwakakosha .
Mharidzo Yekuenda Nayo Kumba
- Cystic Fibrosis (CF) chirwere chakakomba, asi chinorapika.
- Zvakakosha zvikuru kuongorora chirwere ichi nguva isati yakwana uye kuramba uchirapwa zuva nezuva .
- Kana mwana wako aine zviratidzo zvakaita sekuzara kwechipfuva nguva nenguva, kutadza kuwedzera uremu, kana kuti ziya rine munyu wakawandisa, enda kuna chiremba nekukasika.
- Nekuda kwemishonga yemazuva ano uye marapirwo, hupenyu neramangwana revarwere vane CF zvave nani zvikuru nhasi.
- Gara uchitaurirana nechikwata chako chekurapa uye tevera mirairo yavo nemazvo.
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