Yu go mɔs dɔn sɔprayz we di dɔktɔ tɛl yu se yu smɔl pikin gɛt wan sik we dɛn kɔl Spinal Muscular Atrophy (SMA). Na tɔpik we rili sɛnsitiv. Bɔt naw, mɛdikal sayɛns dɔn go bifo bɔku. Dɛn dɔn fɛn nyu we dɛn we rili fayn fɔ mɛn dɛn kayn sik ya. Onasemnogene Abeparvovec na wan pan dɛn kayn we ya we rili advans, we dɛn kin yuz wan tɛm jin tɛrapi. I rili sabi am wit di brand nem Zolgensma. So tide, lɛ wi tɔk bɔt dis mɛrɛsin, di tin dɛn we i de du, tin dɛn we yu fɔ tek tɛm wit, ɛn di sayd ɛfɛkt dɛn we yu gɛt na simpul we we yu go ɔndastand.
Us kayn mɛrɛsin dis? Wetin rili de apin?
Fɔ tɔk am simpul wan, Onasemnogene Abeparvovec na wan mɛrɛsin we de mɛn wan sik we dɛn kɔl Spinal Muscular Atrophy (SMA) . SMA na wan sik we wi kin gɛt frɔm wi bɔdi we kin mek di mɔsul dɛn na wi bɔdi wik smɔl smɔl ɛn west. Dis kin bi bikɔs wan jin we nɔ fayn na wan jin we de mek wan prɔtin we impɔtant fɔ mek di mɔsul dɛn gɛt wɛlbɔdi.
Wetin dis mɛrɛsin de du na fɔ riples di jin we nɔ fayn wit wan wɛlbɔdi kɔpi fɔ di jin we go ebul fɔ mek da prɔtin de kɔrɛkt wan. Dɛn kɔl dis jin tɛrapi . We dis wɛlbɔdi jin go insay di bɔdi, i kin bigin fɔ mek di impɔtant prɔtin. dis kin mek di mכsul dεm nכ wik mכr εn dεn kin kכntrכl di sayn dεm fכ wכs.
Dis na wan tɛm infushɔn. Bikɔs di bɔdi kin gɛt di wɛlbɔdi jin we i nid wit wan doz, i nɔ nid fɔ kɔntinyu fɔ gɛt am.
Tin dɛm fɔ tɛl yu dɔktɔ bifo yu tek dis mɛrɛsin
Bikɔs dis na rili patikyula tritmɛnt, i rili impɔtant fɔ gi di mɛdikal tim wan kɔmplit diskripshɔn bɔt yu pikin in wɛlbɔdi kɔndishɔn. Bifo yu bigin fɔ trit yu, mek shɔ se yu tɛl di dɔktɔ bɔt dɛn tin ya mɔ:
- Infεkshכn naw: If di pikin gεt infεkshכn lεk fiva, kol, כ kכf.
- Liva sik: If yu gɛt ɛni liva sik.
- Di wata we nɔ de na di bɔdi: If wata nɔ de na di bɔdi.
- Alɛji: If yu gɛt alɛji to dis mɛrɛsin ɔ ɛni ɔda mɛrɛsin ɔ it.
- Bεlε כ we dεn de gi bεlε: Dis tritmεnt dεn kin gi pikin to yכng pikin dεm, so dis nכ rili impɔtant, bכt i impɔtant fכ no dis if dεn de gi am to yכng pכsin pan eni we.
Aw dɛn kin gi di mɛrɛsin?
Dis nɔto mɛrɛsin we dɛn kin yuz na os. Dɛn kin gi am na ɔspitul ɔ spɛshal klinik, ɔnda di ful sɔpɔtishɔn fɔ wan mɛdikal tim we gɛt dɔktɔ ɛn nɔs dɛn.
Dis na infushɔn we dɛn kin put insay di bɛlɛ. Dɛn kin gi am insay wan vein, lɛk salin, fɔ lɛk wan awa so. Dɛn kin ivin gi dis tritmɛnt to pikin dɛn we dɛn jɔs bɔn. Bɔt i nid fɔ tek tɛm wit spɛshal tin dɛn ɛn fɔ wach am ɔltɛm.
Wetin fɔ du if yu tek di mɛrɛsin pasmak?
Bikɔs na wan mɛdikal tim na ɔspitul de gi dis, chans nɔ de fɔ mek dɛn tek am pasmak. Bɔt if yu tink se sɔntin dɔn apin, tɛl di dɔktɔ dɛn wantɛm wantɛm. If nɔto dat, kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Kɔlɔmbɔ Nashɔnal Ospital . Ɔ kɛr di pikin go na di Imejɛnsi Tritmɛnt Yunit (ETU) na di ɔspitul we de nia am.
Tin dɛn we yu fɔ tink bɔt we yu de du tritmɛnt ɛn afta yu dɔn gɛt am
Afta yu dɔn gɛt dis tritmɛnt, sɔm tin dɛn de we yu fɔ tek tɛm mɔ bɔt.
Di dɔktɔ we de kia fɔ am ɔltɛm
Afta tritmɛnt, dɔktɔ dɛn go de wach di pikin in kɔndishɔn ɔltɛm. Dɛn kin du blɔd tɛst ɔltɛm fɔ chɛk tin dɛn lɛk aw di liva de wok.
Risk fɔ gɛt di sik
Dis mɛrɛsin kin gɛt sɔm ifɛkt pan di bɔdi in imyun sistɛm, we kin mek di risk fɔ gɛt di sik bɔku.
- If yu gɛt sɔm sayn dɛn lɛk fiva, kol, kɔf, ɔ trot we de at, kɔl yu dɔktɔ wantɛm wantɛm.
- Nɔ gi mɛrɛsin lɛk aw yu want.
- Kip yu pikin fa frɔm pipul dɛn we sik as yu ebul.
Fɔ mek di wata we de na di bɔdi nɔ go pas to ɔda pipul dɛn (i rili impɔtant!) .
Dis na de impɔtant tin wae yu fɔ pe atɛnshɔn to wae yu de du dis tritmɛnt. Afta dɛn dɔn gi di jin tɛrapi, di wata we de na di pikin in bɔdi (lɛk di saliva, urine, ɛn fes) kin gɛt smɔl smɔl tin dɛn we de sho di tritmɛnt fɔ lɛk wan mɔnt so . Yu nid fɔ mek dɛn tin ya nɔ go insay ɔda pɔsin in bɔdi bay aksidɛnt.
- Wash yu an: Was yu an fayn fayn wan wit sop ɛn wata ɛnitɛm we yu kam mit yu pikin in bɔdi wata, mɔ afta yu dɔn chenj dayapɛt.
- Yuz glɔv: If i pɔsibul, wɛr glɔv we yu kin yuz wan tɛm nɔmɔ we yu de chenj yu pikin in daypa.
- Fɔ trowe di nɛpi ɛn dɔti: Put di pikin in dɔti nɛpi we gɛt urine ɛn ɔda tin dɛn insay plastic bag we dɛn dɔn sidɔm fayn ɛn trowe dɛn wit di dɔti we dɛn kin trowe ɔltɛm.
If yu fala dɛn tin ya we yu fɔ tek tɛm wit, yu go mek ɔda pipul dɛn na yu famili nɔ gɛt dis jin tɛrapi bay aksidɛnt.
Ɔda pɔynt dɛn
- Risk fɔ blɔd: Ivin smɔl injuri kin mek yu blɔd bɔku insay dis tɛm. So yuz tut brɔsh we rili saf we yu de brus yu tit. If yu go to dɛntist, mek shɔ se yu tɛl dɛn se yu pikin dɔn gɛt dis tritmɛnt.
- Risk fɔ gɛt tumor dɛn:Na smɔl risk de fɔ mek yu gɛt tumbu na di bɔdi bikɔs ɔf dis mɛrɛsin. Bɔrku pan dɛn tin ya nɔr kin gɛt kansa (benign). Bɔt if yu notis nyu tumbu ɔ lump ɛnisay na yu pikin in bɔdi, tɛl yu dɔktɔ wantɛm wantɛm.
Wetin na di bad tin dɛn we kin apin to pɔsin?
Jɔs lɛk ɛni ɔda mɛrɛsin, dis tritmɛnt kin gɛt sayd ɛfɛkt. Sɔm siriɔs, sɔm kɔmɔn. I impɔtant fɔ no bɔt dɛn tin ya.
| Sayd ɛfɛkt we pɔsin kin gɛt | Wetin yu nid fɔ no ɛn di sayn dɛm fɔ yu |
|---|---|
| Siriɔs sayd ɛfɛkt dɛm we dɛn fɔ ripɔt to di dɔktɔ wantɛm wantɛm | |
| Alɛji we pɔsin kin gɛt | Skin rash, it, swel na di fes, lip, tong ɔ trot. |
| Liva injuri | Pen na di ɔp rayt say na di bɛlɛ, yu nɔ de want fɔ it, yu nɔ de fil fayn, yu de stɔl we gɛt layt kɔlɔ, yu de urine we gɛt dak yɔlɔ ɔ brawn, yu skin ɛn yu yay de yɔlɔ, ɛn yu taya we nɔ kɔmɔn. |
| Brus ɔ blɔd we nɔ kɔmɔn | Blunɛs we nɔ ɛksplen na di pat dɛn na di bɔdi, blɔd we de kɔmɔt na di gɔm, ɛn blɔd we de kɔmɔt na di nos. |
| Sik we de prɛd | Fiva, kol, kɔf, trot we de at, wund we nɔ de wɛl, pen we yu de pis. |
| Riakshɔn dɛn we pɔsin kin du wit infushɔn | Chɛst pen, i nɔ kin izi fɔ blo, diziz, fil se yu nɔ gɛt bɛtɛ trɛnk. |
| Kidni injury | Di pis we de go dɔŋ, di anklɛ, an, ɔ fut we de swel. |
| Ɛmolaytik anemia | Taya ɔ wik we nɔ kɔmɔn, diziz, ed we de at, i nɔ kin izi fɔ blo, yu urine dak, yu skin ɔ yu yay kin yɔlɔ. |
| Sayd ɛfɛkt dɛn we nɔ kin siriɔs, bɔt dɛn fɔ ripɔt to di dɔktɔ if dɛn kɔntinyu fɔ de | |
| Fɔ vɔmit | Dis na nɔmal tin, bɔt if i kɔntinyu ɔ i bad, tɛl yu dɔktɔ. |
Dis list nɔ de inklud ɔl di sayd ɛfɛkt dɛn we pɔsin kin gɛt. Apat frɔm dat, if yu notis ɛnitin we nɔ kɔmɔn ɔ we difrɛn bɔt yu pikin, tɔk to yu dɔktɔ bɔt dat bak.
Mɛsej we dɛn kin kɛr go na os
- Onasemnogene Abeparvovec (Zolgensma) na wan spεsifi k, wan tεm jin tεrapi fכ Spinal Muscular Atrophy (SMA).
- Dɛn kin gi dis tritmɛnt na ɔspitul, ɔnda di ful sɔpɔtishɔn fɔ wan mɛdikal tim.
- I impɔtant fɔ gi ɔl di pikin in wɛlbɔdi infɔmeshɔn to di dɔktɔ bifo yu bigin fɔ trit am.
- I rili impɔtant fɔ tek tɛm ɛn trowe di pikin in bɔdi wata, lɛk fes, urine, ɛn saliva, fɔ wan mɔnt afta dɛn dɔn trit am. Dis na fɔ mek ɔda pipul dɛn na di famili sef.
- Go to dɔktɔ wantɛm wantɛm if yu notis sayn dɛn we de sho se yu liva dɔn pwɛl (yu yay/skin de yɔlɔ, yu urine dak), sayn dɛn fɔ se yu gɛt infɛkshɔn (fiva), ɔ yu gɛt siriɔs alɛji.
- Fil fri fɔ tɔk to yu dɔktɔ bɔt ɛni kwɛstyɔn ɔ wɔri we yu gɛt bɔt dis tritmɛnt.
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