Yu dɔn yɛri bɔt wan sik na yu famili, mɔ di yɔŋ pikin, usay di mɔsul dɛn na di spayna kin wik smɔl smɔl? We wi de du mɛrɛsin, wi kin kɔl dis Spinal Muscular Atrophy (SMA) . Insay Sinhala, na we di mɔsul dɛn we gɛt fɔ du wit di spayna de pwɛl. Dis na wan sik we de kɔmɔt frɔm jɛnɛreshɔn to ɔda jɛnɛreshɔn. Dis na di rizin we mek dis mɔsul wikɛdnɛs kin afɛkt nɔto jɔs di wok dɛn we wi kin du ɛvride, lɛk fɔ ol wi ed stret, sidɔm we wi nɔ ɛp, fɔ waka, fɔ swɛla it, bɔt fɔ blo bak. So, wan nyu mɛrɛsin we dɛn kin gi as tritmɛnt fɔ dis SMA sik na in dɛn kɔl Evrysdi (risdiplam) . Tide, wi go tɔk bɔt dis mɛrɛsin, aw fɔ yuz am, wetin na di bɛnifit dɛn we i gɛt, ɛn wetin na di sayd ɛfɛkt dɛn we yu fɔ no bɔt.
Wan shɔt introdukshɔn to SMA sik ɛn in difrɛn we dɛn
Bifo wi tɔk bɔt di Evrysdi drɔg, lɛ wi ɔndastand smɔl bɔt SMA. Dɛn kin sheb dis sik to sɔm men kayn dɛn bay di ej wae di sik bigin fɔ sho.
- Infantile-onset SMA (Type 1): Dis na di kayn we we kin rili bad. di simptom dεm kin apin we dεn bεlε, bifo i rich 6 mכnt.
- SMA we kin bigin leta (Tayp 2 ɛn 3): Insay dis kayn, di sayn dɛm kin bigin fɔ sho we i smɔl ɔ we i yɔŋ.
- SMA we kin bigin frɔm big pipul dɛn (Tayp 4): Insay dis kes, di sayn dɛn kin apin afta pɔsin dɔn big.
Dɛn kin yuz di mɛrɛsin we dɛn kɔl Evrysdi fɔ mɛn ɔl dɛn kayn tin ya. Dɛn kin gi am bak to pipul dɛm wae dɛn dɔn no se gɛt SMA tru jenɛtik tɛst bɔt nɔr gɛt ɛni simptom yet (pri-symptomatic).
Aw fɔ yuz Evrysdi mɛrɛsin?
Dis na pat we rili impɔtant, bikɔs if yu yuz di mɛrɛsin kɔrɛkt wan, dat kin afɛkt di tin dɛn we kin apin dairekt wan .
Yu go gɛt dis mɛrɛsin frɔm spɛshal famasi, insay likwid fɔm. If yu ɛva gɛt bɔtul we tan lɛk paoda, nɔ miks am ɛn drink am. If dis apin, go to di ples usay dɛn gi yu di mɛrɛsin ɔ yu dɔktɔ wantɛm wantɛm.
Aw fɔ pripia di mɛrɛsin
Yu dɔktɔ go tɛl yu ustɛm fɔ tek ɛn aw fɔ mɛzhɔ ɛn pripia am. Di bɔtul fɔ mɛrɛsin fɔ kam wit kap, bɔtul adapt, ɛn sɔm sirinj dɛn we yu kin yuz bak. If ɛni wan pan dɛn tin ya nɔ de ɔ i brok, tɔk to yu dɔktɔ bifo yu tek di mɛrɛsin.
- I impɔtant fɔ tek di mɛrɛsin di sem tɛm ɛvride .
- Di bɛst tɛm fɔ tek di mɛrɛsin na afta yu dɔn it . If na bebi, .Gi am afta yu dɔn fɔ gi pikin in bɛlɛ .
- Nɔ ɛva miks dis mɛrɛsin wit fɔmula ɔ ɛni ɔda kayn milk, lɛk kaw in milk.
- Afta yu dɔn tek di mɛrɛsin, drink sɔm wata fɔ mek shɔ se yu dɔn swɛla am ɔl.
- Dɛn kin gi sɔm pipul dɛn dis mɛrɛsin tru wan fidin tyub. If na so i bi, yu go nid fɔ was di tiub wit wata afta yu dɔn gi di mɛrɛsin.
Di tin we impɔtant pas ɔl: Yuz di spɛshal sirinj we dɛn gi yu fɔ mɛzhɔ di doz. If i lɔs ɔ brok, aks yu dɔktɔ bifo yu gɛt nyu wan. Yu kin was di sirinj we yu dɔn yuz, klin am, ɛn yuz am di nɛks de.
Tin dɛn we yu fɔ tink bɔt we yu de tek mɛrɛsin
Afta yu dɔn drɔ di doz fɔ di mɛrɛsin insay di sirinj, yu fɔ drink am insay 5 minit . If yu nɔ ebul fɔ drink am insay da tɛm de, trowe di doz ɛn pripia nyu doz.
Dɔn bak, nɔ mek dis mɛrɛsin kam pan yu skin ɔ na yu yay. If i kam pan yu skin, was am fayn fayn wan wit sop ɛn wata. If i go insay yu yay, was yu yay fayn fayn wan wit klin wata. Nɔ miks tu bɔtul mɛrɛsin fɔ wan doz fɔ ɛni rizin.
Aw dɛn bin tɛst di sakrifays we dis mɛrɛsin bin gɛt?
Bifo ɛni mɛrɛsin kam na di makit, dɛn kin du bɔku klinik stɔdi fɔ no aw i wok ɛn i nɔ bad. Di Evrysdi mɛrɛsin dɔn du bɔku pan dɛn kayn tɛst ya bak. Lɛ wi tek wan simpul luk pan am.
| Test tayp | Di wan dɛn we bin tek pat pan di tɛst | Di men tin dɛn we dɛn bin si |
|---|---|---|
| SMA we de bigin fɔ pikin | 58 bebi dεm, we ol lεk 6 mכnt, wit Tayp 1 SMA. | Afta 12 mɔnt we dɛn tek di mɛrɛsin, lɛk wan pat pan tri pan dɛn bin ebul fɔ sidɔm fɔ 5 sɛkɔn we dɛn nɔ ɛp dɛn. Afta 24 mɔnt, lɛk 60% bin ebul fɔ sidɔm da we de. |
| SMA we kin bigin leta | 180 pikin ɛn big pipul dɛn we ol 2-25 ia wit tayp 2 ɔ 3 SMA. (Dɛn bin gi sɔm Evrysdi, sɔm dɛn bin gi dɛn plesibo.) | Mɔtalman wok bin impɔtant pan di wan dɛn we tek Evrysdi, we i bin de dɔŋ pan di wan dɛn we tek di plesibo. |
| Dɛn wan wae nɔr dɔn sho sɔm kayn sik (Pre-symptomatic) . | 26 pikin dεm we nכ rich 6 wiks we dεn bin no se dεn gεt SMA tru jεnεtik tεst, bכt dεn nכ bin gεt asymptomatic. | We 12 mɔnt dɔn, 96% bin ebul fɔ sidɔm fɔ 5 sɛkɔn we dɛn nɔ ɛp. 81% bin ebul fɔ sidɔm fɔ 30 sɛkɔn. |
Mɛmba se dɛn tin ya na tin dɛn we dɛn dɔn du we dɛn dɔn du risach. Di tin dɛn we yu ɔ yu pikin go gɛt kin difrɛn. I kin difrɛn fɔ ɛnibɔdi in bɔdi.
Wetin na di sayd ɛfɛkt dɛm fɔ Evrysdi?
Jɔs lɛk ɛni mɛrɛsin, Evrysdi kin mek sɔm smɔl smɔl sayd ɛfɛkt dɛn. Di wan dɛn we kɔmɔn pas ɔl na:
- Fiva
- Rɔnbɛlɛ
- Skin rash ɔ it
Dɛn tin ya na di sayd ɛfɛkt dɛn we kin apin mɔ, bɔt ɔda sayd ɛfɛkt dɛn de bak we pɔsin kin gɛt.
Wetin fɔ du if di sayd ɛfɛkt dɛn apin?
If yu gɛt fiva, yu kin tɔk to yu dɔktɔ ɛn gɛt di rayt doz fɔ paracetamol.
If yu bɛlɛ lɔs, di tin we impɔtant pas ɔl na fɔ mek yu nɔ gɛt wata na yu bɛlɛ.
- Gi dɛn bɔku wata fɔ drink.
- If na pikin, gi am in mama in bɛlɛ ɔltɛm.
- I rili fayn fɔ gi yɔŋ pikin dɛn drink lɛk Jeevani (oral rehydrating solution) .
- Drink bɔku wata.
Di tin we impɔtant pas ɔl na fɔ tɛl yu dɔktɔ wantɛm wantɛm bɔt ɛni sayn we de mɔna yu ɔ we tan lɛk se i nɔ kɔmɔn. Nɔ jɔs de mɛn yusɛf.
Evrysdi sef we yu gɛt bɛlɛ ɛn we yu de gi pikin in bɛlɛ?
Dis na tin we rili impɔtant.
- If yu gɛt bɛlɛ, yu de plan fɔ gɛt bɛlɛ, ɔ yu de gi pikin in bɛlɛ, mek shɔ se yu tɛl yu dɔktɔ bifo yu bigin Evrysdi.
- Di opinion naw na dat di Evrysdi drɔg kin ambɔg di pikin we de na di bɛlɛ.
- So, bifo yu bigin dis mɛrɛsin, yu fɔ tek bɛlɛ tɛst fɔ mek shɔ se yu nɔ gɛt bɛlɛ.
- Yu fɔ yuz wan we we rili wok fɔ mek yu nɔ bɔn pikin we yu de tek di pil ɛn fɔ at le wan mɔnt afta yu dɔn stɔp di pil.
Fil fri fɔ tɔk bɔt ɛni kwɛstyɔn ɔ wɔri we yu gɛt bɔt dis wit yu dɔktɔ.
Mɛsej we dɛn kin kɛr go na os
- Spinal Muscular Atrophy (SMA) na wan sik we de kam wit jεnεtiks we de mek di mכsul dεm wik. Evrysdi na wan ɔral likwid mɛrɛsin fɔ dis kɔndishɔn.
- Yu fɔ tek di mɛrɛsin jɔs lɛk aw yu dɔktɔ tɛl yu, di sem tɛm ɛvride, i bɛtɛ fɔ tek am afta yu dɔn it.
- Nɔ miks di mɛrɛsin wit tin dɛn we dɛn mek wit milk. Drink sɔm wata afta yu dɔn tek di mɛrɛsin.
- Sɔm bad tin dɛn lɛk fiva, bɛlɛ we de at, ɛn we de mek yu skin rɔsh kin apin. Tɛl yu dɔktɔ bɔt ɛni sayn we de mɔna yu.
- If yu gɛt bɛlɛ, yu de tray fɔ gɛt bɛlɛ, ɔ yu de gi pikin in bɛlɛ, mek shɔ se yu tɔk bɔt aw fɔ tek dis mɛrɛsin wit yu dɔktɔ.
- Tɔk opin wan wit yu dɔktɔ bɔt ɛni kwɛstyɔn ɔ tin we de mɔna yu. Dat na di bɛst ples fɔ gɛt kɔrɛkt infɔmeshɔn.
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