Ngezinye izikhathi njengabazali, sikhathazeka kakhulu ngezinguquko ezincane ezinganeni zethu, akunjalo? Cabanga uma ingane yakho encane ingabambeli intamo yayo iqonde njengezinye izingane, ingagingqiki kahle, noma ingahlali phansi, kuyinto evamile ukuthi uzizwe ukhathazekile kancane. Ngezinye izikhathi imbangela yalezi zinto ingaba yi -Spinal Muscular Atrophy , noma i-SMA ngamafuphi. Namuhla sikhuluma nge-Spinraza, umuthi osetshenziswa emhlabeni wonke njengokwelapha lesi sifo se-SMA.
Kalula nje, kuyini i-Spinal Muscular Atrophy (SMA)?
I-Spinal Muscular Atrophy (SMA) iyisifo esibangelwa izakhi zofuzo . Kusho ukuthi singadluliselwa esizukulwaneni ngesizukulwane. Okwenzekayo kulokhu ukuthi imisipha emzimbeni wethu, okungukuthi, imisipha, iba buthaka kancane kancane. Lobu buthakathaka bungenza kube nzima ngengane ukugcina intamo yayo iqondile, ihlale yodwa, ihambe, futhi kwezinye izimo ezinzima, ngisho nezinto ezilula njengokugwinya nokuphefumula.
Kunezinhlobo eziningana zalesi sifo, zihlukaniswe ngokweminyaka lapho izimpawu ziqala ukuvela khona.
- I-SMA yokuzalwa kwezinsana: Uma izimpawu zivela enganeni encane kakhulu (ngaphambi kwezinyanga ezingu-6).
- I-SMA Yengane/Eyesiphetho Sokuqala: Uma izimpawu zivela ebuntwaneni (ngemva kwezinyanga eziyi-6).
- I-SMA Yokuqala Kwabantu Abadala: Uma izimpawu zivela ngemva kokuba abantu abadala.
Uma kukhulunywa ngalesi sifo, i-Spinraza iyindlela yokwelapha ebaluleke kakhulu yalesi sifo. Ake sixoxe ngayo ngokuningiliziwe manje.
Inikezwa kanjani ukwelashwa kwe-Spinraza (Nusinersen)?
I-Spinraza ayinikezwa njengomjovo ojwayelekile. Inikezwa njengomjovo wangaphakathi kwe-thecal . Kalula nje, ifakwa ngqo oketshezini lomgogodla, olungaphakathi komgogodla wakho. Lokhu kufanele kwenziwe kuphela odokotela abaqeqeshwe ngokukhethekile. Ngakho-ke, lokhu kwelashwa kuvame ukwenziwa esikhungweni sokwelashwa esikhethekile esibhedlela. Le nqubo ingathatha amahora amaningana.
Uma ukwelashwa kuqala, kunikezwa imithamo emine, ebizwa ngokuthi "imithamo yokulayisha," ngezikhathi eziseduze.
1. Imithamo emithathu yokuqala inikezwa njalo ezinsukwini eziyi-14.
2. Umthamo wesine unikezwa ezinsukwini ezingama-30 ngemva komthamo wesithathu.
Ngemva kwalezo zilinganiso ezine, ukwelashwa kuyaqhubeka ngomthamo owodwa njalo ezinyangeni ezine .
Ngezinye izikhathi ukuhlolwa kwegazi nomchamo wakho kungenziwa ngaphambi kokuba unikezwe lo muthi.Udokotela wakho angase akunike imithamo embalwa. Lokhu kwenzelwa ukubona ukuthi umuthi uyasebenza yini. Kodwa-ke, udokotela wakho kuphela onganquma ukuthi uzonikezwa kangaki ukwelashwa, ukuthi umthamo ungakanani, nokuthi yiziphi izivivinyo okudingeka uzenze.
Into ebaluleke kakhulu ukuthi ungalokothi uphuthelwe ukwelashwa kwakho okuhleliwe kanye nokuhlolwa njengoba kunqunywe udokotela wakho.
Iyini imiphumela yalo muthi?
Kuye kwenziwa izifundo ezimbili ezinkulu ukuze kuhlolwe ukusebenza kahle komuthi we-Spinraza: owodwa ezinganeni ezincane kakhulu (ukuqala kwezinsana), kanti omunye ezinganeni ezindala kancane (ukuqala kamuva).
Kulezi zifundo , ezinye zezingane zanikwa umuthi i-Spinraza. Elinye iqembu lanikwa inqubo yokukhohlisa . Lokhu kusho ukuthi empeleni azijovwanga ngalo muthi, kodwa zahlatshwa nje ngenaliti encane. Lokhu kwenzelwa ukukala umphumela wangempela womuthi.
Imiphumela iyakhuthaza ngempela.
- Ocwaningweni lwezingane ezincane: Cishe ingxenye yezingane ezathola i-Spinraza ibonise ukuthuthuka okukhulu ezigabeni zokunyakaza, kuyilapho kungekho neyodwa yezingane ezathola i-placebo ebonise ukuthuthuka.
- Esifundweni sezingane ezindala: Ngemva kwezinyanga ezingu-15, ama-57% ezingane ezathola i-Spinraza ayesebenze kahle kakhulu, uma kuqhathaniswa nama-26% kuphela alabo abathola i-placebo.
Lokhu kubonisa ukuthi lokhu kwelashwa kungenza umehluko ongakanani empilweni yeziguli ze-SMA. Kodwa khumbula, lena imiphumela yocwaningo, futhi imiphumela yengane yakho ingase ihluke. Udokotela wakho ungumuntu ongcono kakhulu ukuqonda lokhu.
Imiphumela emibi ye-Spinraza kanye nezingozi ezinkulu
Njenganoma yimuphi umuthi, i-Spinraza ingabangela imiphumela emibi. Lokhu kuyahlukahluka kancane kuye ngokuthi izimpawu ziqala nini.
| Isikhathi sokuqala kwezimpawu | Imiphumela emibi evamile |
|---|---|
| Ukuqala kwezinsana | Izifo zokuphefumula eziphansi (isib. izifo zamaphaphu) kanye nokuqunjelwa. |
| Ukuqala kamuva | Umkhuhlane, ikhanda elibuhlungu, ukuhlanza kanye nobuhlungu emhlane. |
Amathiphu okuphatha imiphumela emibi evamile
- Ngekhanda elibuhlungu: Lala kahle, udle ngesikhathi, futhi uphuze amanzi amaningi.
- Ngokuqunjelwa: Yidla izithelo eziningi, imifino, nokudla okucebile nge-fiber, bese uphuza amanzi amaningi.
- Vimbela izifo: Geza izandla zakho njalo futhi ugweme ukuthinta ubuso bakho.
Nakuba lokhu kuyimiphumela emibi evamile, qiniseka ukuthi utshela udokotela wakho uma iqhubeka noma ibonakala inzima.
Qaphela kakhulu, izingozi ezinkulu!
Kufanele uqaphele izingozi ezimbili ezingavamile kakhulu, kodwa ezingathi sína kakhulu, ezihlobene ne-Spinraza.
| Ingozi | Izimpawu okufanele uziqaphele |
|---|---|
| Ingozi yokopha (Ingozi Yokopha - Ama-Platelet Aphansi) |
|
| Ukulimala kwezinso (Ukulimala Kwezinso) |
|
Kubaluleke kakhulu:Uma wena noma ingane yakho nithola noma yiziphi izimpawu ezinkulu ezishiwo ngenhla, yazisa udokotela wakho ngokushesha noma uye eMnyangweni Wezimo Eziphuthumayo (ETU) wesibhedlela esiseduze. Lokhu akuyona into yokulibazisa.
Umlayezo Wokuya Nawe Ekhaya
- I-Spinal Muscular Atrophy (SMA) yisifo esibangelwa ufuzo esenza imisipha ibe buthaka.
- I-Spinraza (Nusinersen) iyindlela yokwelapha esetshenziswa kulesi sifo esiza ekuthuthukiseni ukusebenza kwemisipha.
- Lokhu kwelashwa kunikezwa udokotela ochwepheshe, ngokujova oketshezini lomgogodla.
- Imiphumela emibi evamile efana nekhanda elibuhlungu kanye nomkhuhlane ingase ivele. Kodwa-ke, hlala uqaphele izimpawu ezingathi sína ezifana nokopha ngokweqile noma ukulimala kwezinso.
- Landela imiyalelo kadokotela wakho ngqo. Ungaphuthelwa ama-aphoyintimenti ahleliwe okwelashwa nokuhlolwa.
- Xoxa nganoma yimiphi imibuzo onayo mayelana nokwelashwa, imiphumela yako emibi, kanye nezindleko ngokukhululekile nochwepheshe wakho wezokwelapha.
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