Dokotala akakuuzani kuti mwana wanu ali ndi vuto losowa lotchedwa Mucopolysaccharidosis type VII, kapena mwachidule MPS VII (Sly Syndrome), inu, monga mayi kapena bambo, muyenera kuti munadabwa kwambiri komanso munada nkhawa. Nthawi yomweyo, mutamva za katemera wotchedwa Vestronidase alfa (dzina lodziwika bwino: MEPSEVII) ngati mankhwala a izi, muyenera kuti muli ndi mafunso ambiri m'maganizo mwanu. Ndizachilendo kuganiza zinthu monga, "Kodi mankhwalawa ndi chiyani? Kodi angathandize mwanayo? Kodi pali zotsatirapo zina?" Musachite mantha. Lero, tikambirana za mankhwalawa m'chinenero chosavuta chomwe mungamvetse, mwaubwenzi.
Mwachidule, kodi Vestronidase alfa ndi chiyani?
Taganizirani thupi lathu ngati fakitale yayikulu. Fakitale iyi ili ndi 'antchito' apadera kuti agwire ntchito zosiyanasiyana. Timatcha antchito awa kuti 'ma enzyme'. Mwa mwana yemwe ali ndi vuto ngati la MPS VII, thupi silipanga enzyme yofunika, kapena limapanga zochepa kwambiri.
Vestronidase alfa ndi mankhwala omwe amathetsa vuto limenelo . Kunena zoona, ndi mankhwala obwezeretsa ma enzyme (ERT) . Chomwe katemerayu amachita ndikupatsa mwana enzyme yomwe siipangidwa mwachibadwa m'thupi. Pamene enzyme iyi ilowa m'thupi, imaphwanya zinthu zoopsa zomwe zimasonkhana m'thupi ndipo zimathandiza kuwongolera zizindikiro.
Chofunika kwambiri ndichakuti ichi si mankhwala a matendawa. Komabe, chithandizochi chingathandize kuchepetsa zizindikiro, kukonza moyo wa mwana, komanso kupangitsa mwana kukhala ndi moyo wabwino.
Kodi mwana angamupatse bwanji mankhwala awa?
Mankhwalawa si mapiritsi omwe angamezedwa kapena kubayidwa kunyumba. Vestronidase alfa imaperekedwa ngati njira yothira, monga saline, mumtsempha .
Njira imeneyi nthawi zonse imachitika kuchipatala kapena ku chipatala , moyang'aniridwa ndi madokotala ndi anamwino. Zingatenge maola angapo. Gulu lachipatala nthawi zonse limafufuza momwe mwana alili (kugunda kwa mtima, kuthamanga kwa magazi, ndi zina zotero) pamene mwanayo akulandira chithandizochi. Choncho simuyenera kuda nkhawa ndi chitetezo cha mwana wanu.
Ngakhale kuti chithandizochi chingaperekedwe ngakhale kwa makanda obadwa kumene, pali njira zapadera zodzitetezera zomwe ziyenera kutsatiridwa kutengera zaka ndi momwe mwana alili. Dokotala wa mwana wanu adzakudziwitsani za izi.
Zinthu zomwe muyenera kuuza dokotala wanu musanayambe kulandira chithandizo
Musanayambe chithandizochi, ndikofunikira kwambiri kuuza dokotala zambiri zokhudza thanzi la mwana wanu. Izi zidzakuthandizani kudziwa momwe mwanayo adzachiritsidwire komanso njira zodzitetezera.
| Nkhani yoti mudziwe | N’chifukwa chiyani zimenezo n’zofunika? |
|---|---|
| Mtundu uliwonse wa ziwengo | Onetsetsani kuti mwadziwitsa dokotala wanu ngati muli ndi vuto lililonse la ziwengo ku vestronidase alfa, mankhwala ena, zakudya, utoto, kapena zosungira. Izi zithandiza kupewa ziwengo zoopsa. |
| Mimba kapena kuyesa kutenga mimba | Ngati munthu amene akulandira chithandizo ndi wachinyamata, ndikofunikira kwambiri kumudziwitsa ngati ali ndi pakati kapena akuyesera kutenga pakati. |
| Kuyamwitsa | Ngati mayi akulandira chithandizo, ayenera kuuza dokotala ngati akuyamwitsa mwana. |
Ndi zinthu ziti zomwe tiyenera kusamala nazo popereka mankhwala?
Dziwani ngati pali ziwengo zoopsa.
Mankhwalawa angayambitse ziwengo kwambiri mwa ana ena. Pofuna kuchepetsa chiopsezochi, dokotala wanu angasankhe kukupatsani mankhwala ena (monga antihistamines monga piritan, ochepetsa malungo) pafupifupi ola limodzi musanapereke katemera wa Vestronidase alfa. Choncho tsatirani malangizo a dokotala wanu molondola.
Mlingo Wosowa
Ndikofunikira kwambiri kupeza katemerayu pa nthawi yake. Ngati pazifukwa zina simungathe kupita kuchipatala pa tsiku lomwe mwakonza, imbani dokotala wanu nthawi yomweyo ndikuwadziwitsa , kuti akuuzeni za tsiku lotsatira.
Kuchuluka kwa mankhwala osokoneza bongo
Popeza mankhwalawa amaperekedwa kuchipatala, mwayi woti munthu agwiritse ntchito mankhwala mopitirira muyeso ndi wochepa kwambiri. Komabe, ngati izi zitachitika kapena mukukayikira, dziwitsani gulu lachipatala nthawi yomweyo. Ngati muli ndi vuto lililonse kunyumba, imbani National Poisons Information Centre ku Colombo National Hospital . Kapena pitani ndi mwanayo ku Emergency Treatment Unit (ETU) ya chipatala chapafupi.
Mavuto ndi mankhwala ena
Sizinaphunziridwe bwino momwe mankhwalawa amagwirira ntchito ndi mankhwala ena. Chifukwa chake, ndikofunikira kwambiri kudziwitsa dokotala wanu za mankhwala ena aliwonse, mavitamini, mankhwala azitsamba, kapena zowonjezera zomwe mwana wanu akumwa. Komanso, musayambe mankhwala atsopano popanda kufunsa dokotala wa mwana wanu kaye.
Kodi zotsatirapo zake zingakhale zotani chifukwa cha mankhwalawa?
Monga mankhwala ena aliwonse, katemera wa Vestronidase alfa angayambitse zotsatira zina zoyipa. Ngakhale zambiri mwa izi ndi zazing'ono, pali zinthu zina zomwe tiyenera kuzidziwa bwino.
| Zotsatirapo zoyipa zomwe muyenera kuuza dokotala wanu kapena namwino nthawi yomweyo | |
|---|---|
| Zizindikiro zoopsa za ziwengo | Kukwiya pakhungu, eczema, ziphuphu pakhungu, kuyabwa, kutupa kwa milomo, lilime kapena nkhope. |
| Kuvuta kupuma | Kuvuta kupuma, kulimba pachifuwa, phokoso losazolowereka popuma. |
| Kuthamanga kwa magazi kotsika | Chizungulire, maso abuluu, pafupifupi kutaya chidziwitso. |
| Zotsatirapo zomwe nthawi zambiri sizili zoopsa, koma ziyenera kufotokozedwa kwa dokotala ngati zikupitirira | |
| Kutsegula m'mimba | Kutupa m'mimba. |
| Kusamva bwino pamalo obayira jakisoni | Ululu, kufiira, kapena kutupa mozungulira malo omwe jakisoniyo amaperekedwa. |
Mndandandawu suli ndi zotsatirapo zonse zomwe zingachitike. Kuphatikiza apo, ngati muwona china chake chachilendo, musazengereze kulankhula ndi dokotala wanu za icho.
Uthenga Wopita Nawo Kunyumba
- Vestronidase alfa ndi mankhwala obwezeretsa ma enzyme omwe amawongolera zizindikiro za matenda osowa otchedwa MPS VII (Sly Syndrome). Si mankhwala a matendawa.
- Mankhwalawa amaperekedwa ngati njira yolowetsera m'mitsempha m'chipatala, moyang'aniridwa ndi dokotala.
- Musanayambe chithandizo, ndikofunikira kudziwitsa dokotala za ziwengo zonse za mwana wanu ndi matenda ena.
- Ngati mukukumana ndi zizindikiro zoopsa za ziwengo monga kutupa pankhope, kuvutika kupuma, kapena ziphuphu pakhungu panthawi ya chithandizo, dziwitsani gulu lachipatala nthawi yomweyo.
- Musaphonye tsiku lomwe mwakonza kuti mudzalandire chithandizo pazifukwa zilizonse. Ngati mwaphonya, imbani dokotala nthawi yomweyo.
- Ngati muli ndi mafunso kapena nkhawa zokhudzana ndi mankhwalawa, kambiranani ndi dokotala wanu.
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