Uma ingane yakho noma ilungu lomndeni litshelwa udokotela ukuthi linesifo esibizwa ngokuthi i-Spinal Muscular Atrophy (SMA), ukuthi kumelwe ukuba sasinzima futhi sesabeka kangakanani... Kuyindaba ebucayi kakhulu. Kodwa ungakhathazeki. Namuhla, isayensi yezokwelapha isithuthuke kakhulu. Kunezindlela zokwelapha ezintsha ezingasiza ekulweni nalezi zimo futhi zenze impilo ibe lula. Enye yezindlela zokwelapha eziqondile nezithuthukisiwe yi-Nusinersen. Kungenzeka ukuthi uke wezwa ngayo ngaphansi kwegama lomkhiqizo i-Spinraza. Ngakho-ke, namuhla, ake sixoxe kalula nangendlela enomusa ngalo muthi, ukuthi unikezwa kanjani, nokuthi yini okudingeka ukwazi.
Kalula nje, kuyini iNusinersen?
I-Nusinersen umuthi okhethekile owenzelwe ngqo ukwelapha i-Spinal Muscular Atrophy (SMA). I-SMA iyisifo esibangelwa izakhi zofuzo. Kulokhu, amangqamuzana ezinzwa (ama-motor neurons) alawula imisipha yethu ayancipha kancane kancane. Ngemuva kwalokho imisipha iyayeka ukusebenza kahle.
Yilapho iNusinersen ingena khona. Lo muthi usiza imizimba yethu ukuthi ikhiqize iphrotheni ebalulekile ebizwa ngokuthi i-SMN (Survival of Motor Neuron). Le phrotheni igcina amangqamuzana ezinzwa alawula imisipha ephilile.
Into ebalulekile ukuthi i-Nusinersen ayilona ikhambi le-SMA. Kodwa-ke, ingasiza ekulawuleni ukuqhubeka kwesifo futhi ithuthukise amandla emisipha ngezinga elithile . Lokhu kungathuthukisa kakhulu ikhwalithi yokuphila kwesiguli.
Izinto okudingeka uzitshele udokotela wakho ngaphambi kokuqala ukwelashwa
Ngaphambi kokuqala ukwelashwa nge-Nusinersen, kubalulekile ukunikeza udokotela wakho incazelo ephelele ngesimo sempilo yakho noma sengane yakho. Qiniseka ukuthi uyabazisa ngalokhu okulandelayo ikakhulukazi:
| Isimo sempilo noma ithuba | Kungani kubalulekile kudokotela? |
|---|---|
| Isifo sezinso | Njengoba izinso zihilelekile enqubweni yokususa i-Nusinersen emzimbeni, udokotela kufanele aqaphele kakhulu uma kukhona ubuthakathaka ezinso. |
| Izinkinga zokujiya kwegazi, njengezinhlayiya eziphansi zegazi | Lo muthi ngezinye izikhathi ungathinta inani lama-platelet, ngakho-ke uma usengozini yokopha, udokotela wakho kufanele aqaphele lokhu kusenesikhathi. |
| Uma ukhulelwe noma uzama ukukhulelwa | Kusenemininingwane elinganiselwe ngemiphumela yalo muthi ngesikhathi sokukhulelwa, ngakho-ke kufanele uxoxe ngezingozi nezinzuzo nodokotela wakho ngaphambi kokwenza isinqumo. |
| Uma umntwana enceliswa ibele | Njengoba kungacaci ukuthi umuthi udlulela enganeni ngobisi lwebele, kubaluleke kakhulu ukuxoxa ngalokhu nodokotela wakho. |
Lo muthi unikezwa kanjani emzimbeni?
Lokhu akulona ikhambi lasekhaya. I-Nusinersen iwumuthi wokugoma onikezwa uchwepheshe esibhedlela noma emtholampilo.
Lokhu akufani nomjovo ovame ukuwujova engalweni noma esinqeni. Ufakwa oketshezini oluzungeze umgogodla, ekholomu yomgogodla. Uma sikhuluma iqiniso, lokhu kubizwa ngokuthi umjovo we-intrathecal . Le nqubo yenziwa yithimba lodokotela abaqeqeshiwe nabanolwazi.
Lokhu kwelashwa kunganikezwa iziguli ze-SMA zanoma ibuphi ubudala, kusukela ezinsaneni ezisanda kuzalwa kuya kubantu abadala. Kodwa-ke, isinqumo sithathwa udokotela wakho ngemva kokuhlola ngokucophelela isimo sesiguli.
Wenzani uma uphuthelwa isikhathi sokwelashwa?
Lokhu kwelashwa kunikezwa ngesheduli ethile. Ngakho-ke , kubaluleke kakhulu ukuya esibhedlela ngosuku oluhleliwe ukuze uthole ukwelashwa. Uma ngesizathu esithile esiphuthumayo ungakwazi ukuya ngosuku oluhleliwe, shayela udokotela wakho noma isibhedlela ngokushesha ubazise. Bazokweluleka ngalokho okufanele ukwenze.
Ingabe ikhona imiphumela emibi?
Njenganoma yimuphi umuthi, eminye imiphumela emibi ingase ivele ngesikhathi sokwelashwa nge-Nusinersen. Eminye yale miphumela mincane, kanti eminye idinga ukunakwa okukhethekile.
| Uhlobo lomphumela ongemuhle | Izimpawu |
|---|---|
| Izinto okufanele uzibike ngokushesha kudokotela wakho noma e-Emergency Treatment Unit (ETU) yesibhedlela | |
| Izimpawu zokopha |
|
| Izinkinga zezinso | Ubunzima bokuchama noma ushintsho enanini lomchamo owudlulayo. |
| Izinto ezingavamile ukuba zimbi kakhulu, kodwa okufanele zibikwe kudokotela uma ziqhubeka | |
| Imiphumela emibi evamile |
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Uma uhlangabezana nanoma yiziphi izimpawu ezingavamile ezingabhalwanga lapha, khuluma nodokotela wakho ngazo. Uma usola ukuthi kukhona ubuthi obubangelwa izidakamizwa, ungashayela iNational Poisons Information Center eColombo National Hospital .
Ingabe iyasebenzisana neminye imithi?
Akukho mibiko yeminye imithi ebangela ukusebenzisana okukhulu neNusinersen. Kodwa-ke, ukuze uphephe, tshela udokotela wakho ngazo zonke izinto ozithathayo.
- Imithi yezinye izifo
- Imithi engekho ngaphansi kukadokotela
- Amavithamini, amakhambi, noma izithasiselo zokudla
- Futhi, yazisa udokotela ngokubhema nokusebenzisa utshwala.
Udokotela wakho uzoqapha isimo sakho njalo phakathi nokwelashwa kwakho. Kuzodingeka futhi ukuthi kwenziwe umsebenzi wegazi ngezikhathi ezithile ukuze uhlole ukusebenza kwezinso zakho kanye nenani lama-platelet. Kubaluleke kakhulu ukuthi ungaweqi lezi zivivinyo.
Umlayezo Wokuya Nawe Ekhaya
- I-Nusinersen iyindlela ethile yokwelapha esiza ukulawula nokuphatha izimpawu ze-Spinal Muscular Atrophy (SMA). Ayiselaphi lesi sifo ngokuphelele.
- Lo muthi unikezwa esibhedlela ngudokotela ochwepheshe ngokujova oketshezini oluzungeze umgogodla.
- Ngaphambi kokuqala ukwelashwa, tshela udokotela ngazo zonke izimo zezokwelapha onazo wena noma ingane yakho (ikakhulukazi izinkinga zezinso kanye nokujiya kwegazi) kanye nayo yonke imithi oyiphuzayo.
- Funa usizo lwezokwelapha ngokushesha uma ubona imiphumela emibi kakhulu, njengezimpawu zokopha noma izinkinga zokuchama.
- Kubaluleke kakhulu ukuthola ukwelashwa ngesikhathi futhi udokotela akunike ukuhlolwa kwegazi.
- Uma uneminye imibuzo mayelana nalokhu kwelashwa, sicela ungangabazi ukubuza udokotela wakho.
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