As mama ɔ papa, a ɔndastand aw yu at kin ebi we dɔktɔ tɛl yu se yu smɔl pikin gɛt spɛshal mɔsul atrofi, ɔ wetin wi ɔl sabi as ‘Spinal Muscular Atrophy’ (SMA). Bɔt we di sayɛns bɔt mɛrɛsin dɔn go bifo, nyu tritmɛnt dɛn we rili prɔmis dɔn kam naw fɔ dil wit dɛn kayn tin dɛn de. Tide wi de tɔk bɔt wan pan dɛn kayn rili spɛshal, mɔdan drɔgs. Dat na di mɛrɛsin we dɛn kɔl Onasemnogene Abeparvovec.
Fɔ tɔk am simpul wan, wetin na dis Onasemnogene Abeparvovec?
Dis na smɔl kɔmplikɛt nem, bɔt lɛ wi kip am simpul. Yu kin dɔn yɛri bɔt dis drɔg we gɛt di brand nem `Zolgensma`. Dis nɔto rɔm pil ɔ kapsul. Dis na jin tɛrapi .
Imajin, ɔl di wok we wi bɔdi de du, na wi jin dɛn de kɔntrol am. Jɔs lɛk kɔmpyuta program. insay SMA, wan difεkt de na wan jin we de mek wan protin we implεnt fכ di mכsul dεm fכ wok. So, wetin dis Onasemnogene Abeparvovec tritmɛnt de du na fɔ put kɔpi fɔ wan wɛlbɔdi jin insay di pikin in bɔdi instead ɔf da jin we nɔ fayn. dis hεlty jin de kכri to di bכdi in nεv sεl dεm wit di εp fכ wan vayrus we dεn mכdify we nכ de du bad (adeno-associated virus).
Di impɔtant tin na dat dis nɔto tritmɛnt we go mɛn SMA ɔltogɛda. Bɔt i kin ɛp fɔ mek di sik nɔ de go bifo ɛn ɛp di pikin in mɔsul dɛn fɔ wok ɛn fɔ mek i strɔng.
Aw dɛn kin gi dis tritmɛnt?
Dɛn kin gi dis mɛrɛsin na ɔspitul, ɔnda di ful sɔpɔtishɔn fɔ spɛshal dɔktɔ dɛn ɛn nɔs wokman dɛn. Dis na tritmɛnt we dɛn kin gi pɔsin infuzhɔn . Lɛk salin sɔlvushɔn, dɛn kin gi dis mɛrɛsin smɔl smɔl na di bɔdi fɔ lɛk wan awa so. Dɛn kin gi dis tritmɛnt wan tɛm nɔmɔ insay in layf.
Dɛn kin gi dis tritmɛnt to pikin dɛn we dɛn jɔs bɔn ɛn smɔl pikin dɛn. Di spɛshal mɛdikal tim we de chɛk di pikin go disayd if dis tritmɛnt fayn fɔ yu pikin ɔ nɔ fayn fɔ yu pikin. So nɔ wɔri bɔt am.
Tin dɛm wae yu fɔ tɛl yu dɔktɔ bifo yu gɛt tritmɛnt
Bikɔs dis na tritmɛnt we rili advans, i rili impɔtant fɔ tɛl di mɛdikal tim ɔl di ditil dɛm bɔt yu pikin in wɛlbɔdi kɔndishɔn bifo yu bigin tritmɛnt. Mek shɔ se yu tɛl dɛn bɔt dɛn tin ya mɔ.
- If di pikin gɛt at sik.
- If yu dɔn ripɔt ɛni liva sik ɔ chenj na di liva ɛnzaym bifo tɛm.
- Insay di blɔdIf yu gɛt blɔd kɔndishɔn lɛk we di pletlɛt dɛn nɔ bɔku.
- If yu bin dɔn gɛt alɛji fɔ dis mɛrɛsin ɔ ɛni ɔda mɛrɛsin ɔ it.
- If di mama gɛt bɛlɛ, i de tray fɔ gɛt bɛlɛ, ɔ i de gi pikin in bɛlɛ.
Fɔ gi dis infɔmeshɔn kɔrɛkt wan rili impɔtant fɔ mek di pikin sef.
Wetin na di sayd ɛfɛkt dɛm we di tritmɛnt kin gɛt?
Lɛk ɛni mɛrɛsin, dis tritmɛnt kin mek sɔm bad bad tin dɛn apin. Sɔm na nɔmal tin, bɔt sɔm tin dɛn de we wi nid fɔ rili tek tɛm wit. Lɛ wi brok dɛn klia wan.
| Sayd ɛfɛkt we pɔsin kin gɛt | Diskripshɔn ɛn wetin fɔ du |
|---|---|
| Siriɔs sayd ɛfɛkt dɛm we dɛn fɔ ripɔt to di dɔktɔ wantɛm wantɛm | |
| Simptom dɛm fɔ Liva Injury | Dis na di impɔtant ɛn kɔmɔn siriɔs sayd ɛfɛkt. Wach fɔ di sayn dɛm lɛk fɔ yɔlɔ na yu yay ɔ yu skin (we tan lɛk janda), dak yɔlɔ/brawn urine, dak stɔl, pen na di ɔp rayt say na yu bɛlɛ, nɔs, nɔr kin want fɔ it, ɛn taya pasmak. If yu notis ɛni wan pan dɛn tin ya , tɛl yu dɔktɔ wantɛm wantɛm . |
| Alɛji Riakshɔn dɛn | If yu gɛt sɔm sayn dɛn lɛk we yu skin de rɔsh, it, yu fes, yu lip, ɔ yu tɔng de swel, ɔ yu nɔ ebul fɔ blo, na imejensi. Tɛl yu dɔktɔ wantɛm wantɛm. |
| Blɔd ɔ brus we nɔ kɔmɔn | Bikɔs di pletlɛt dɛn de go dɔŋ, di blɔd nɔ kin stɔp ivin frɔm smɔl wund, ɛn brus kin apin ɔnda di skin. Infɔm yu dɔktɔ bɔt dis bak. |
| Sayn dɛn we de sho se pɔsin gɛt di sik | If yu gɛt fiva fɔ natin, yu kol, yu trot de at, ɔ yu kɔf, tɛl yu dɔktɔ bɔt dat. |
| Sayd ɛfɛkt dɛm wae nɔr kin siriɔs, bɔt dɛn fɔ ripɔt to di dɔktɔ | |
| Fɔ vɔmit | Yu pikin kin vɔmit afta dɛn dɔn trit yu. Bɔku tɛm, dis kin stɔp insay sɔm dez. Bɔt if i kɔntinyu fɔ de ɔ if i nɔ izi fɔ yu pikin, tɛl yu dɔktɔ. |
Wetin a go du if a gɛt ɔvados?
Bikɔs dɛn kin gi dis mɛrɛsin ɔnda dɔktɔ in sɔpɔtishɔn na di ɔspitul, chans nɔ de fɔ mek dɛn tek am pasmak. Bɔt if yu tink se dis dɔn apin, yu fɔ tɛl di ɔspitul in Imejɛnsi Tritmɛnt Yunit (ETU) wantɛm wantɛm . Yu kin kɔl bak di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Kɔlɔmbɔ Nashɔnal Ospital fɔ advays if nid de.
Tin dɛn we yu fɔ tink bɔt we yu de du tritmɛnt ɛn afta yu dɔn gɛt am
Blɔd tɛst dɛn
Bifo ɛn afta di tritmɛnt, yu pikin go nid fɔ du blɔd tɛst ɔltɛm fɔ wach aw in liva de wok ɛn aw in pletlɛt dɛn de fɔ sɔm tɛm. Dis na fɔ yu pikin in sef, so i rili impɔtant fɔ mek dɛn du dɛn tɛst ya jɔs di de dɛn we dɛn dɔn plan fɔ du lɛk aw yu dɔktɔ tɛl yu.
Aw fɔ handle di wata we de kɔmɔt na di bɔdi ɛn di dɔti
Dis na pɔynt we rili impɔtant we bɔku pipul dɛn nɔ kin pe atɛnshɔn to. Afta tritmɛnt, sɔm pat pan dis mɛrɛsin (modified virus) kin kɔmɔt na di pikin in stɔl ɛn urine fɔ wan mɔnt ɔ mɔ. So, di wan dɛn na di famili fɔ tek tɛm mɔ we dɛn de chenj ɛn klin di pikin in dayapɛt.
- Wear glɔv ɛvri tɛm we yu chenj dayapɛt.
- Put di dayapɛt we yu dɔn yuz insay plastic bag we dɛn dɔn sidɔm fayn fayn wan ɛn trowe am na wan sɛpret dɔti bɔks.
- Afta yu dɔn chenj di daypa, was yu an dɛn fayn fayn wan wit sop.
- If yu pikin in klos ɔ bed dɔti wit fes ɔ urine, was am apat insay ɔt wata.
Nɔ wɔri bɔt dis. Bifo yu kɔmɔt na ɔspitul ɛn go na os, di mɛdikal tim go gi yu klia instrɔkshɔn bɔt aw fɔ du dɛn tin ya.
Mɛsej we dɛn kin kɛr go na os
- Onasemnogene Abeparvovec (Zolgensma) na wan spεsifi k jin tεrapi fכ Spinal Muscular Atrophy (SMA), we dεn kin gi intravenכs wan tεm insay layf.
- Pan ɔl we dis nɔ kin mɛn di sik ɔltogɛda, i kin ɛp fɔ kɔntrol aw di sik de go bifo ɛn fɔ mek di pikin in layf bɛtɛ.
- I impɔtant fɔ tɛl di dɔktɔ bɔt di pikin in kɔmplit wɛlbɔdi istri (espɛshali di prɔblɛm dɛn we gɛt fɔ du wit di liva, at, ɛn blɔd) bifo dɛn trit am.
- Tek tɛm bad bad wan bɔt sayn dɛm we de sho se di liva dɔn pwɛl (di skin/ay yɔlɔ, yu urine dak) afta yu dɔn trit yu. If yu notis ɛni sayn lɛk dis, tɛl yu dɔktɔ wantɛm wantɛm.
- I rili impɔtant fɔ fala di dɔktɔ in advays we yu de ol di pikin in dayapɛt ɛn west fɔ sɔm mɔnt afta dɛn dɔn trit am.
- If yu gɛt ɛnitin fɔ wɔri bɔt dis tritmɛnt, nɔ ɛva gɛs, bɔt aks di dɔktɔ ɔ di mɛdikal tim we de trit yu pikin.
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