Ngati mwana wanu ali ndi Duchenne Muscular Dystrophy (DMD), madokotala mwina adalankhula za katemera wotchedwa Viltolarsen (dzina la kampani: Viltepso). Ndizachilendo kuti mafunso ambiri abwere m'maganizo mwanu panthawi ngati iyi. Kodi mankhwalawa ndi amtundu wanji? Kodi kwenikweni amagwira ntchito yanji? Kodi tiyenera kuda nkhawa ndi chiyani? Lero, tikambirana zonsezi m'chinenero chosavuta kumva.
Kodi kwenikweni chimachitika ndi mankhwala awa ndi chiyani?
Mwachidule, ana omwe ali ndi Duchenne (DMD) ali ndi vuto la majini popanga puloteni yotchedwa 'Dystrophin', yomwe ndi yofunika kwambiri kuti minofu ikhale yolimba. Mankhwalawa, otchedwa Viltolarsen, amathandiza thupi kusintha mapuloteni ena omwe akusowa. Mwa kuyankhula kwina, mankhwalawa amathandiza kuti minofu igwire bwino ntchito.
Komabe, ndikofunikira kumvetsetsa kuti iyi si mankhwala a matendawa. Komanso, mankhwalawa saperekedwa kwa ana onse omwe ali ndi DMD. Ndi oyenera ana okha omwe ali ndi kusintha kwa majini . Madokotala adzasankha ngati chithandizochi chili choyenera kwa mwana wanu atatha kuyezetsa.
Zinthu zoti muuze dokotala musanapatse mwana wanu mankhwala
Mwana wanu asanayambe chithandizochi, muyenera kukambirana nkhaniyi ndi dokotala wanu. Musabise chilichonse, chifukwa chitetezo cha mwana ndiye chinthu chofunikira kwambiri.
- Uzani mwana wanu ngati ali ndi matenda aliwonse a impso .
- Ngati munakhalapo ndi vuto la Viltolarsen kapena mankhwala ena aliwonse, chakudya, kapena utoto, chonde fotokozani momveka bwino.
- Ndikofunikanso kudziwitsa dokotala ngati munthu amene akulandira chithandizochi ali wamng'ono, akuyesera kutenga pakati, kutenga pakati, kapena kuyamwitsa .
Kutengera ndi izi, dokotalayo adzakhala wosamala kwambiri akamathandiza mwanayo.
Kodi mwana angapereke bwanji mankhwala?
Iyi si piritsi yomwe mumamwa kapena mankhwala apakhomo. Iyi ndi jakisoni mumtsempha, kapena molondola , kulowetsedwa mumtsempha . Monga momwe amachitira popereka saline, amonke amapereka mankhwala awa ku thupi.
Chithandizochi chimachitika kuchipatala kapena ku chipatala chonse, motsogozedwa ndi ogwira ntchito zachipatala ophunzitsidwa bwino, kotero mulibe chodetsa nkhawa nacho.
Kodi mungachite chiyani ngati mwaphonya nthawi yokumana ndi dokotala?
Kuti chithandizochi chitheke, ndikofunikira kwambiri kumwa mwanayo ndikupereka mlingo wake malinga ndi masiku ndi nthawi zomwe dokotala wapereka.Musaphonye mlingo uliwonse. Ngati simungathe kupita tsiku lomwe mwakonza chifukwa cha ngozi, imbani dokotala wanu nthawi yomweyo kuti muwadziwitse ndikupeza upangiri wa zomwe mungachite kenako.
Nanga bwanji ngati nditamwa mankhwala ochulukirapo?
Izi zimaperekedwa kuchipatala, kotero mwayi woti izi zichitike ndi wochepa kwambiri. Komabe, ngati mukuganiza kuti mwamwa mankhwala opitirira muyeso, pitani ku Emergency Treatment Unit (ETU) ya chipatala nthawi yomweyo. Kapena imbani National Poisons Information Centre ku Colombo National Hospital kuti mupeze upangiri.
Zotsatirapo zomwe zingatheke
Monga mankhwala ena aliwonse, Viltolarsen ingayambitse zotsatira zina zoyipa. Zina mwa izi zitha kukhala zoopsa, choncho ndikofunikira kuzidziwa.
| Mtundu wa zotsatira zoyipa | Kufotokozera ndi choti muchite |
|---|---|
| Zizindikiro zazikulu zomwe zimafuna thandizo lachipatala mwamsanga | |
| Matenda a ziwengo | Ngati mukumva zizindikiro monga kutupa pakhungu, kuyabwa kwambiri, kutupa thupi, kupuma movutikira, kapena kutupa nkhope, milomo, kapena lilime, dziwitsani dokotala nthawi yomweyo. |
| Zizindikiro za kuvulala kwa impso | Ngati muwona kusintha kwa kuchuluka kwa kukodza, kuvutika kukodza, kapena kusintha kwa mtundu wa mkodzo wanu, dziwitsani dokotala wanu nthawi yomweyo. |
| Zizindikiro zomwe nthawi zambiri sizili zazikulu, koma ziyenera kufotokozedwa kwa dokotala ngati zikupitirira | |
| Zotsatirapo zazing'ono |
Izi nthawi zambiri zimatha patatha masiku ochepa, koma ngati zikupitirira kapena ngati mwanayo sakumva bwino, uzani dokotala. |
Mndandandawu uli ndi zotsatirapo zochepa chabe zomwe zimafala kwambiri. Ngati muwona china chake chachilendo mwa mwana wanu, musazengereze kulankhula ndi dokotala wanu za icho.
Kodi pali kuyanjana kulikonse ndi mankhwala ena?
Kutengera ndi mayeso omwe alipo pano, palibe malipoti a mankhwala ena omwe amagwirizana ndi katemera wa Viltolarsen.
Komabe, ndi bwino kupatsa dokotala wanu mndandanda wathunthu wa mankhwala ena onse omwe mwana wanu akumwa (mankhwala a matenda ena, mavitamini, mankhwala achikhalidwe, ndi zowonjezera zakudya). Izi zithandiza kupewa mavuto osafunikira.
Uthenga Wopita Nawo Kunyumba
- Viltolarsen ndi mankhwala omwe amathandiza kuwongolera vuto la Duchenne muscular dystrophy (DMD), koma si mankhwala athunthu .
- Mankhwalawa amaperekedwa kwa odwala omwe ali ndi kusintha kwa majini .
- Iyi ndi jakisoni woperekedwa m'mitsempha, ndipo amaperekedwa ndi ogwira ntchito zachipatala ophunzitsidwa bwino kuchipatala kapena ku chipatala .
- Ngati mwana wanu ali ndi matenda a impso kapena ziwengo zina , onetsetsani kuti mwadziwitsa dokotala musanayambe kulandira chithandizo.
- Ngati mukukumana ndi mavuto aakulu monga kutupa pankhope, kuvutika kupuma, kapena kusintha kwa kuchuluka kwa mkodzo , funsani dokotala nthawi yomweyo .
- Ndikofunikira kwambiri kumwa mankhwala anu pa nthawi yake, ndipo musaope kufunsa dokotala wanu mafunso aliwonse omwe mungakhale nawo.
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