If yu pikin gɛt Duchenne Muscular Dystrophy (DMD), yu go dɔn yɛri bɔt di nem Casimersen. Bikɔs na nyu mɛrɛsin, yu kin gɛt bɔku kwɛstyɔn bɔt am. Us kayn drɔgs na, aw i de wok, ɛn wetin na di tin dɛn we yu fɔ tek tɛm wit we yu de gi yu pikin am? Nɔ wɔri, wi go tɔk bɔt ɔl dat simpul ɛn klia wan tide.
Wetin rili na Casimersen?
Fɔ tɔk am simpul wan, Casimersen na wan mɛrɛsin we dɛn kin gi pikin dɛn we gɛt Duchenne Muscular Dystrophy (DMD) ɛn wan patikyula jin we de chenj . I nɔ de mɛn di sik, bɔt i de ɛp fɔ kɔntrol di wikɛd we di mɔsul dɛn kin gɛt we di sik kin kam wit.
Naw lɛ wi si aw dis de wok. Imajin se di mɔsul dɛn na wi bɔdi tan lɛk wɔl we dɛn mek wit brik. Wi bɔdi gɛt wan prɔtin we tan lɛk mɔta we de tay dɛn brik ya togɛda ɛn mek dɛn strɔng. Dɛn kɔl am distrofin . pan pikin dεm we gεt DMD, di bכdi nכ de prodyuz dis distrofin protin. Dis kin mek di wɔl we dɛn kɔl mɔsul kin wik smɔl smɔl ɛn bigin fɔ fɔdɔm.
Wetin di Casimersen vaksin de du na fɔ ɛp di bɔdi fɔ mek wan pat pan di Dystrophin protin , ivin if i nɔ ebul fɔ mek di ful Dystrophin protin. I tan lɛk se yu de tray fɔ mek di wɔl strɔng bay we yu ad ɔda tin we yu kin yuz instead fɔ yuz di bɛst plasta, ilɛksɛf nɔto di bɛst. Dis kin mek di mɔsul dɛn wik.
Di impɔtant tin na dat dis mɛrɛsin nɔ fayn fɔ ɛvri pikin we gɛt DMD. I fayn fɔ pikin dɛn nɔmɔ we gɛt wan patikyula jɛnɛtik muteshɔn. Na yu dɔktɔ nɔmɔ go disayd if dis tritmɛnt fayn fɔ yu pikin.
Tin dɛm fɔ tɛl di dɔktɔ bifo yu gi di pikin mɛrɛsin
Bifo yu pikin bigin fɔ tek Casimersen tritmɛnt, i impɔtant fɔ tɛl yu dɔktɔ dɛn tin ya. Nɔ ayd dɛn tin ya, bikɔs dɛn rili impɔtant fɔ mek yu pikin sef.
- Kidni sik: If yu pikin gɛt ɛni prɔblɛm wit in kidni, mek shɔ se yu tɛl am bɔt am.
- Alɛji: Tɛl yu pikin if i dɔn gɛt alɛji fɔ Casimersen ɔ ɛni ɔda mɛrɛsin, it, day, ɔ tin dɛn we de mek i nɔ pwɛl.
- Bɛlɛ ɔ tray fɔ gɛt bɛlɛ: If yɔŋ gyal pikin de gɛt dis tritmɛnt, tɛl di dɔktɔ if i gɛt bɛlɛ ɔ i de tray fɔ gɛt bɛlɛ.
- Fɔ gi pikin in mama in bɛlɛ: Dɛn fɔ tɔk bɔt am bak if di pɔsin we de gɛt di tritmɛnt na mama we de gi pikin in bɛlɛ.
Aw fɔ gi di mɛrɛsin? Ɛn wetin fɔ tek tɛm wit
Dɛn kin gi dis mɛrɛsin as injɛkshɔn insay wan vein . Dis nɔto sɔntin we yu go ebul fɔ du na os. Na di mɛdikal wokman dɛn we tren na ɔspitul ɔ klinik kin gi am .
Wetin yu go du if yu mis wan doz fɔ mɛrɛsin?
I rili impɔtant fɔ gɛt di vaysin pan di de dɛn we dɛn dɔn sɛtul fɔ dis tritmɛnt. So, nɔ skip di de dɛn we di dɔktɔ gi yu fɔ apɔntin. If fɔ sɔm rizin yu nɔ ebul fɔ go di de we dɛn dɔn sɛtul, kɔl yu dɔktɔ wantɛm wantɛm ɛn tɛl am bɔt dis ɛn sɛt de fɔ di nɛks visit.
Wetin a go du if a tek bɔku mɛrɛsin?
Dɛn kin gi dis na ɔspitul, so di chans fɔ mek dis apin rili smɔl. Bɔt if yu tink se yu dɔn tek di mɛrɛsin tumɔs, tɛl di wan dɛn we de wok na di ɔspitul wantɛm wantɛm, ɔ kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Kɔlɔmbɔ Nashɔnal Ospital . Ɔ go na di Imejɛnsi Tritmɛnt Yunit (ETU) we de nia yu .
Wetin na di sayd ɛfɛkt dɛn we pɔsin kin gɛt we i yuz di mɛrɛsin?
Lɛk ɛni mɛrɛsin, Casimersen kin mek sɔm sayd ɛfɛkt dɛn. Dɔktɔ dɛn go tek tɛm wach yu pikin in kɔndishɔn ɔl di tɛm we dɛn de trit yu. Bɔt, i impɔtant fɔ mek yu as mama ɔ papa no bɔt dis.
Pe atɛnshɔn to di kwaliti dɛn we de na di tebul we de dɔŋ ya.
| Sayd ɛfɛkt we pɔsin kin gɛt | Diskripshɔn ɛn wetin fɔ du |
|---|---|
| 🚨 Siriɔs sayd ɛfɛkt dɛm we yu fɔ ripɔt to yu dɔktɔ wantɛm wantɛm | |
| Alɛji we pɔsin kin gɛt | If yu gɛt sɔm sayn dɛn wantɛm wantɛm lɛk we yu skin de rɔsh, it, yu fes, yu lip, ɔ yu tɔng de swel, dat kin bi siriɔs alɛji. Ripɔt am wantɛm wantɛm. |
| Kidni injury | If yu notis se i nɔ izi fɔ yu fɔ pis ɔ yu chenj di urine we yu de mek (i de go dɔŋ bad bad wan ɔ yu nɔ de pis atɔl), tɛl yu dɔktɔ wantɛm wantɛm. |
| 🙂 If dɛn kɔntinyu ɔ de mɔna yu, yu fɔ tɛl yu dɔktɔ. Kɔmɔn sayd ɛfɛkt dɛn | |
| Kɔf ɛn trot we de at | Wan kɔmɔn kɔf ɔ trot we de at. |
| Fiva | Fɔ fil se yu gɛt fiva. |
| Ed de at | Ed de at. |
| Pen na di jɔyn dɛn | Di pen na di bɔdi ɛn di jɔyn dɛn. |
Prɔblɛm kin de wit ɔda mɛrɛsin dɛn?
Akɔdin to di infɔmeshɔn we de naw, dɛn nɔ ripɔt se Casimersen de mek ɛni spɛshal intarakshɔn wit ɔda drɔgs.
Bɔt nɔ tink se na so i bi. Gi yu dɔktɔ wan kɔmplit list fɔ ɔl di mɛrɛsin dɛn we yu pikin de tek (inklud vaytamɛn dɛn, ɛbul mɛrɛsin dɛn, ɛn sɔpɔtmɛnt dɛn) . Na di bɛst we fɔ mek yu pikin sef.
Mɛsej we dɛn kin kɛr go na os
- Casimersen na dכg we de εp fכ prodyuz wan sεmi-fכnshכnal fכm fכ di Dystrophin protin, we nכ de insay Duchenne Muscular Dystrophy (DMD).
- Dis nɔto mɛrɛsin fɔ di sik, bɔt i kin ɛp fɔ kɔntrol di sayn dɛm.
- Dis tritmɛnt na fɔ pikin dɛn nɔmɔ we gɛt wan patikyula jɛnɛtik muteshɔn, ɛn yu dɔktɔ go disayd.
- Dis na injɛkshɔn we dɛn kin gi insay di bɛlɛ na ɔspitul. Dɛn nɔ kin kip am ɔ gi am na os.
- Bifo yu gi di mɛrɛsin, tɛl di dɔktɔ ɔl yu pikin in wɛlbɔdi infɔmeshɔn, lɛk kidni sik ɛn alɛji.
- Go to dɔktɔ wantɛm wantɛm if yu notis se yu gɛt siriɔs alɛji (di skin/fes de swel) ɔ yu chenj we yu de pis.
- Fil fri fɔ tɔk to yu dɔktɔ bɔt ɛni kwɛstyɔn ɔ tin we de mɔna yu.
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