If yu pikin gɛt Duchenne Muscular Dystrophy (DMD), dɔktɔ dɛn kin dɔn tɔk bɔt wan vaysin we dɛn kɔl Viltolarsen (brand nem: Viltepso). Na nɔmal tin fɔ mek wan tawzin kwɛstyɔn dɛn kam na mi maynd pan tɛm lɛk dis. Us kayn mɛrɛsin dis? Wetin i rili de du? Wetin wi fɔ wɔri bɔt? Tide, wi go tɔk bɔt ɔl dis insay simpul langwej we izi fɔ ɔndastand.
Wetin kin rili apin wit dis mɛrɛsin?
fכ simpul wan, pikin dεm we gεt Duchenne (DMD) gεt jεnεtik prכblεm wit di prodakshכn fכ wan protin we dεn kכl ‘Dystrophin’, we implεnt fכ kip di mכsul dεm strכng. Dis drɔg we dɛn kɔl Viltolarsen de ɛp di bɔdi fɔ tek sɔm pan di prɔtin we nɔ de. In ɔda wɔd, dis drɔg de ɛp fɔ mek sɔm mɔsul dɛn kɔntinyu fɔ wok.
Bɔt i impɔtant fɔ ɔndastand se dis nɔto mɛrɛsin fɔ di sik. Dɔn bak, dɛn nɔ kin gi dis mɛrɛsin to ɔl pikin dɛn we gɛt DMD. I fayn fɔ pikin dɛn nɔmɔ we gɛt wan patikyula jin muteshɔn . Dɔktɔ dɛn go disayd if dis tritmɛnt fayn fɔ yu pikin afta dɛn dɔn du di tɛst.
Tin dɛm fɔ tɛl di dɔktɔ bifo yu gi yu pikin mɛrɛsin
Bifo yu pikin bigin dis tritmɛnt, yu fɔ rili tɔk bɔt dɛn tin ya wit yu dɔktɔ. Nɔ ayd ɛnitin, bikɔs di pikin in sef na di tin we impɔtant pas ɔl.
- Tɛl yu pikin if i gɛt ɛni sik na in kidni .
- If yu dɔn gɛt alɛji fɔ Viltolarsen ɔ ɛni ɔda mɛrɛsin, it, ɔ day trade, duya tɔk dis klia wan.
- I rili impɔtant bak fɔ tɛl di dɔktɔ if di pɔsin we de tek dis tritmɛnt yɔŋ, de tray fɔ gɛt bɛlɛ, gɛt bɛlɛ, ɔ de gi pikin in bɛlɛ .
Bay dis infɔmeshɔn, di dɔktɔ go tek tɛm mɔ we i de trit di pikin.
Aw fɔ gi pikin mɛrɛsin?
Dis nɔto pil we yu de tek ɔ na os mɛrɛsin. Dis na injεkshכn insay wan vein, כ mכr prεsis , infushכn insay wan vein . Jɔs lɛk aw dɛn kin gi salin, di mɔnk dɛn kin gi dis mɛrɛsin to di bɔdi.
Dɛn kin du dis tritmɛnt ɔl na ɔspitul ɔ klinik, ɔnda di sɔpɔtishɔn fɔ tren mɛdikal wokman dɛm, so yu nɔr gɛt natin fɔ wɔri bɔt.
Wetin fɔ du if yu mis apɔntinmɛnt fɔ tek mɛrɛsin?
Fɔ mek dis tritmɛnt go bifo, i rili impɔtant fɔ tek di pikin ɛn gi di doz jɔs di de ɛn tɛm we di dɔktɔ gi am.. Nɔ mis ɛni dos. If yu nɔ ebul fɔ go di de we yu dɔn sɛtul bikɔs ɔf imejensi, kɔl yu dɔktɔ wantɛm wantɛm fɔ mek dɛn no ɛn gɛt advays bɔt wetin fɔ du nɛks.
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 go dɔn tek di mɛrɛsin pasmak, go na di ɔspitul in Imejɛnsi Tritmɛnt Yunit (ETU) wantɛm wantɛm. Ɔ kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Kɔlɔmbɔ Nashɔnal Ospital fɔ advays.
Sɔm sayd ɛfɛkt dɛn we pɔsin kin gɛt
Lɛk ɛni mɛrɛsin, Viltolarsen kin mek sɔm sayd ɛfɛkt dɛn. Sɔm pan dɛn tin ya kin siriɔs, so i impɔtant fɔ no bɔt dɛn.
| Tayp fɔ di sayd ɛfɛkt | Diskripshɔn ɛn wetin fɔ du |
|---|---|
| Siriɔs sayn dɛm wae nid fɔ go to dɔktɔ kwik kwik wan | |
| Alɛji we pɔsin kin gɛt | If yu gɛt sɔm sayn dɛn lɛk we yu skin de rɔsh, yu de it bad bad wan, yu de swel, yu nɔ de blo fayn, ɔ yu fes, yu lip, ɔ yu tɔng de swel, tɛl yu dɔktɔ wantɛm wantɛm. |
| Sayn dɛn we de sho se pɔsin in kidni dɔn wund | If yu notis se di tɛm we yu de pis ɔ di kayn we aw yu de pis chenj, i nɔ izi fɔ pis, ɔ di kɔlɔ we yu de pis dɔn chenj, tɛl yu dɔktɔ wantɛm wantɛm. |
| Di sayn dɛm wae nɔr kin siriɔs, bɔt dɛn fɔ ripɔt to di dɔktɔ if dɛn kɔntinyu fɔ de | |
| Smɔl smɔl sayd ɛfɛkt dɛn |
Dɛn tin ya kin stɔp insay sɔm dez, bɔt if dɛn kɔntinyu fɔ de ɔ if di pikin nɔ fil fayn, tɛl di dɔktɔ. |
Dis list gɛt sɔm pan di sayd ɛfɛkt dɛm nɔmɔ we kin apin. If yu notis ɛnitin we nɔ kɔmɔn pan yu pikin, nɔ de te fɔ tɔk to yu dɔktɔ bɔt am.
Ɛni intarakshɔn de wit ɔda mɛrɛsin dɛn?
Bay di tɛst we dɛn de du naw, dɛn nɔ dɔn ripɔt ɔda mɛrɛsin dɛn we de intarakt wit di Viltolarsen vaysin.
Bɔt i bɛtɛ fɔ gi yu dɔktɔ wan kɔmplit list fɔ ɔl di ɔda mɛrɛsin dɛn we yu pikin de tek (mɛrɛsin fɔ ɔda sik dɛn, vaytamɛn dɛn, tradishɔnal mɛrɛsin dɛn, tin dɛn fɔ it). Dis go ɛp fɔ mek prɔblɛm dɛn we nɔ nid fɔ apin.
Mɛsej we dɛn kin kɛr go na os
- Viltolarsen na mɛrɛsin we de ɛp fɔ kɔntrol di sik we dɛn kɔl Duchenne muscular dystrophy (DMD), bɔt i nɔto kɔmplit mɛrɛsin .
- Dɛn kin gi dis mɛrɛsin to di wan dɛn nɔmɔ we gɛt wan patikyula jɛnɛtik muteshɔn .
- Dis na injɛkshɔn we dɛn kin gi na vein, ɛn na di dɔktɔ dɛn we tren na ɔspitul ɔ klinik nɔmɔ kin gi am .
- If yu pikin gɛt kidni sik ɔ ɔda alɛji , mek shɔ se yu tɛl di dɔktɔ bifo yu bigin fɔ trit am.
- If yu gɛt ɛni siriɔs sayd ɛfɛkt lɛk we yu fes swel, i nɔ izi fɔ blo, ɔ yu chenj di we aw yu de pis , go to dɔktɔ wantɛm wantɛm .
- I rili impɔtant fɔ tek yu dos dɛn di rayt tɛm, ɛn nɔ ɛva fred fɔ aks yu dɔktɔ ɛni kwɛstyɔn we yu go gɛt.
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