Nthawi zina monga makolo, timada nkhawa kwambiri ndi kusintha pang'ono kwa ana athu, sichoncho? Tangoganizirani ngati mwana wanu wamng'ono sagwira khosi lake molunjika ngati ana ena, sakupindika bwino, kapena sakukhala pansi, ndi zachilendo kuti mumve nkhawa pang'ono. Nthawi zina chifukwa cha zinthuzi chingakhale Spinal Muscular Atrophy , kapena SMA mwachidule. Lero tikulankhula za Spinraza, mankhwala omwe amagwiritsidwa ntchito padziko lonse lapansi ngati mankhwala a matenda a SMA awa.
Mwachidule, kodi Spinal Muscular Atrophy (SMA) ndi chiyani?
Kufooka kwa Minofu Yam'msana (SMA) ndi matenda obadwa nawo . Zimatanthauza kuti amatha kufalikira kuchokera ku mibadwomibadwo kupita ku mibadwomibadwo. Chomwe chimachitika pamenepa ndi chakuti minofu m'thupi lathu, ndiko kuti, minofu, imafooka pang'onopang'ono. Kufooka kumeneku kungapangitse kuti mwana asamavutike kusunga khosi lake molunjika, kukhala yekha, kuyenda, komanso nthawi zina zovuta, ngakhale zinthu zosavuta monga kumeza ndi kupuma.
Pali mitundu ingapo ya matendawa, yogawidwa malinga ndi zaka zomwe zizindikiro zimayamba kuonekera.
- Kusanza kwa makanda: Zizindikiro zikaonekera mwa mwana wamng'ono kwambiri (asanafike miyezi 6).
- SMA ya Ana/Kukula kwa Ana Pambuyo Pake: Ngati zizindikiro zikuwonekera ali mwana (pambuyo pa miyezi 6).
- SMA ya akuluakulu: Ngati zizindikiro zikuwonekera munthu akakula.
Ponena za matendawa, Spinraza ndi mankhwala ofunikira kwambiri pa izi. Tiyeni tikambirane mwatsatanetsatane tsopano.
Kodi chithandizo cha Spinraza (Nusinersen) chimaperekedwa bwanji?
Spinraza siiperekedwa ngati jakisoni wamba. Imaperekedwa ngati jakisoni wamkati . Mwachidule, imayikidwa mwachindunji m'madzi amsana, omwe ali mkati mwa msana wanu. Izi ziyenera kuchitidwa ndi madokotala ophunzitsidwa bwino okha. Chifukwa chake, chithandizochi nthawi zambiri chimachitikira kuchipatala chapadera. Izi zitha kutenga maola angapo.
Chithandizo chikayamba, milingo inayi, yotchedwa "milingo yokweza," imaperekedwa nthawi ndi nthawi.
1. Mlingo woyamba wa mankhwala atatu umaperekedwa masiku 14 aliwonse .
2. Mlingo wachinayi umaperekedwa patatha masiku 30 kuchokera pamene mlingo wachitatu unaperekedwa.
Pambuyo pa mlingo wa mankhwala anayi amenewo, chithandizo chimapitirira ndi mlingo umodzi miyezi inayi iliyonse .
Nthawi zina mayeso anu a magazi ndi mkodzo angachitike musanapatsidwe mankhwalawa.Dokotala wanu angakupatseni mlingo wochepa. Izi ndi kuona ngati mankhwalawo akugwira ntchito. Komabe, dokotala wanu yekha ndi amene angasankhe kangati kamene mudzapatsidwa chithandizocho, mlingo wake, ndi mayeso omwe muyenera kuchita.
Chofunika kwambiri ndichakuti musaphonye chithandizo ndi mayeso omwe mwakonza monga momwe dokotala wanu wanenera.
Kodi zotsatira za mankhwalawa ndi zotani?
Kafukufuku awiri akuluakulu achitika kuti afufuze momwe mankhwala a Spinraza amagwirira ntchito: mmodzi mwa ana aang'ono kwambiri (woyamba makanda), ndi wina mwa ana okulirapo (woyamba pambuyo pake).
Mu maphunziro awa, ana ena anapatsidwa mankhwala a Spinraza. Gulu lina linapatsidwa njira yonyenga . Izi zikutanthauza kuti sanabayidwe ndi mankhwalawo, koma anangobayidwa ndi singano yaying'ono. Izi zimachitika kuti ayesere zotsatira zenizeni za mankhwalawa.
Zotsatira zake n’zolimbikitsa kwambiri.
- Mu kafukufuku wa makanda aang'ono: Pafupifupi theka la makanda omwe adalandira Spinraza adawonetsa kusintha kwakukulu pakuyenda bwino, pomwe palibe makanda omwe adalandira placebo omwe adawonetsa kusintha kulikonse.
- Mu kafukufuku wa ana okalamba: Pambuyo pa miyezi 15, 57% ya ana omwe adalandira Spinraza anali ndi minofu yogwira bwino ntchito, poyerekeza ndi 26% yokha ya omwe adalandira placebo.
Izi zikusonyeza kusiyana kwakukulu komwe chithandizochi chingapange m'miyoyo ya odwala a SMA. Koma kumbukirani, izi ndi zotsatira za kafukufuku, ndipo zotsatira za mwana wanu zitha kukhala zosiyana. Dokotala wanu ndiye munthu wabwino kwambiri womvetsetsa izi.
Zotsatirapo za Spinraza ndi zoopsa zazikulu
Monga mankhwala ena aliwonse, Spinraza ingayambitse zotsatirapo zake. Izi zimasiyana pang'ono kutengera zaka zomwe zizindikiro zimayambira.
| Nthawi yoyambira zizindikiro | Zotsatira zoyipa zofala |
|---|---|
| Kuyamba kwa makanda | Matenda a m'mapapo (monga matenda a m'mapapo) ndi kudzimbidwa. |
| Kuyamba kwa pambuyo pake | Malungo, mutu, kusanza ndi kupweteka kwa msana. |
Malangizo othana ndi zotsatira zoyipa zofala
- Kuchiza mutu: Gonani bwino, idyani pa nthawi yake, ndipo imwani madzi ambiri.
- Pa kudzimbidwa: Idyani zipatso zambiri, ndiwo zamasamba, ndi zakudya zokhala ndi ulusi wambiri, ndipo imwani madzi ambiri.
- Pewani matenda: Sambani m'manja nthawi zambiri ndipo pewani kukhudza nkhope yanu.
Ngakhale kuti izi ndi zotsatirapo zofala, ngati zikupitirira kapena zikuoneka ngati zoopsa, onetsetsani kuti mwadziwitsa dokotala wanu.
Samalani kwambiri, zoopsa zazikulu!
Muyenera kudziwa zoopsa ziwiri zomwe sizichitika kawirikawiri, koma zazikulu kwambiri, zokhudzana ndi Spinraza.
| Chiwopsezo | Zizindikiro zoti muzisamala nazo |
|---|---|
| Kuopsa kwa kutuluka magazi (Chiwopsezo cha Kutuluka Magazi - Magazi Ochepa Ochokera M'magazi) |
|
| Kuwonongeka kwa impso (Kuwonongeka kwa Impso) |
|
Chofunika kwambiri:Ngati inu kapena mwana wanu mukupeza zizindikiro zazikulu zomwe zatchulidwa pamwambapa, dziwitsani dokotala wanu nthawi yomweyo kapena pitani ku Dipatimenti Yothandiza Pangozi (ETU) ya chipatala chapafupi. Si chinthu chochedwetsa.
Uthenga Wopita Nawo Kunyumba
- Kufooka kwa Minofu Yam'msana (SMA) ndi matenda obadwa nawo omwe amafooketsa minofu.
- Spinraza (Nusinersen) ndi mankhwala omwe amagwiritsidwa ntchito pa matendawa omwe amathandiza kukonza magwiridwe antchito a minofu.
- Chithandizochi chimaperekedwa ndi dokotala waluso, kudzera mu jakisoni mu madzi a msana.
- Zotsatirapo zoyipa monga mutu ndi kutentha thupi zimatha kuchitika. Komabe, nthawi zonse dziwani zizindikiro zazikulu monga kutuluka magazi kwambiri kapena kuwonongeka kwa impso.
- Tsatirani malangizo a dokotala wanu molondola. Musaphonye nthawi yokumana ndi dokotala kuti akalandire chithandizo ndi mayeso.
- Kambiranani mafunso aliwonse omwe muli nawo okhudza chithandizochi, zotsatira zake, ndi ndalama zake poyera ndi katswiri wanu wochiza.
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