Dɛn dɔn no se yu pikin gɛt Duchenne Muscular Dystrophy (DMD)? Ɛn dɛn dɔn tɛl yu bɔt di drɔg we dɛn kɔl Eteplirsen as spɛshal tritmɛnt fɔ am? Na nɔmal tin fɔ mek yu fred smɔl, wɔri, ɛn shem we yu yɛri nem lɛk dis, mɔ we i kam pan yu pikin. Bɔt nɔ fred. Fɔ no na di tin we wi gɛt pas ɔl. Tide, lɛ wi tɔk insay wan rili simpul ɛn fayn fayn we bɔt wetin Eteplirsen bi, wetin i de du, ɛn wetin yu nid fɔ no bɔt am as mama ɔ papa.
Us kayn mɛrɛsin Eteplirsen rili bi?
Fɔ tɔk am simpul wan, Eteplirsen na spɛshal mɛrɛsin we dɛn kin yuz fɔ mɛn wan sik we dɛn kɔl Duchenne Muscular Dystrophy (DMD) . Bɔt dɛn nɔ kin gi am to ɔl pikin dɛn we gɛt DMD. Na pikin dɛn nɔmɔ we gɛt wan patikyula jin muteshɔn nɔmɔ dɛn kin gi am .
Tink bɔt am, di mɔsul dɛn na wi bɔdi tan lɛk di wɔl dɛn na bildin. Dɛn wɔl dɛn ya nid siment fɔ mek dɛn kɔntinyu fɔ strɔng. Semweso, fɔ mek wi mɔsul dɛn strɔng ɛn gɛt wɛlbɔdi, wi nid wan spɛshal prɔtin we dɛn kɔl distrofin . Pikin dεm we gεt DMD gεt difεkt pan di prodakshכn fכ dis distrofin protin.
Wetin di drɔg Eteplirsen de du na fɔ ɛp di distrofin protin, we di jenɛtik dɛfekt dɔn mek i nɔ ebul fɔ wok bak, te to sɔm mak. dat min se dis dכg de εp di mכsul dεm fכ mek sכm pan di distrofin protin we dεn nid.
Impɔtant tin na dat, Eteplirsen nɔto mɛrɛsin fɔ DMD. Bɔt i kin slo di rit we di mɔsul dɛn we di sik kin mek kin wik, ɛn dis kin mek di pikin gɛt sɔm rilif.
Tin dɛm wae yu fɔ tɛl yu dɔktɔ bifo yu bigin tritmɛnt
Bifo yu pikin bigin dis tritmɛnt, i impɔtant fɔ mek yu ɛksplen dɛn tin ya klia wan to yu dɔktɔ . Nɔ ayd ɛnitin, bikɔs ɔl dis infɔmeshɔn impɔtant fɔ di pikin in sef.
- Alɛji: Mek shɔ se yu tɛl yu pikin if i gɛt ɛni alɛji to Eteplirsen ɔ ɛni ɔda mɛrɛsin, it, day, ɔ tin dɛn we de mek i nɔ pwɛl.
- Bɛlɛ ɔ tray fɔ gɛt bɛlɛ: Dis nɔ kin apin to pikin dɛn, bikɔs dɛn kin gi dis mɛrɛsin to pikin dɛn. Bɔt if dɛn de trit yɔŋ pɔsin fɔ ɛni rizin, dɛn fɔ tɛl di dɔktɔ if i gɛt bɛlɛ ɔ i de tray fɔ gɛt bɛlɛ.
- Fɔ gi pikin in mama in bɛlɛ: If di pɔsin we de gɛt di tritmɛnt na mama we de gi in mama in bɛlɛ, dɛn fɔ tɛl di dɔktɔ bak.
Aw yu kin gi pikin dis mɛrɛsin?
Dis nɔto mɛrɛsin we dɛn kin yuz na os. Eteplirsen na injεkshכn insay wan vein. Dɛn kin gi dis tritmɛnt na ɔspitul ɔ klinik, ɔnda di ful sɔpɔtishɔn fɔ dɔktɔ ɔ tren nɔs staf. So nid nɔ de fɔ wɔri bɔt di pikin in sef.
Dɛn kin gi dis vaysin wan tɛm insay di wik. I rili impɔtant fɔ fala di rayt de ɛn tɛm fɔ di tritmɛnt.
Wetin a go du if a mis wan de fɔ tek mi mɛrɛsin?
Fɔ mek yu gɛt di bɛst pan dis tritmɛnt, i impɔtant fɔ mek yu gɛt di vaysin dɛn di rayt tɛm. If fɔ sɔm rizin yu nɔ ebul fɔ kɛr yu pikin go na ɔspitul di de we dɛn dɔn sɛtul, kɔl yu dɔktɔ ɔ klinik wantɛm wantɛm ɛn mek dɛn no. Dɛn go advays yu 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 na lɛk ziro. Bɔt if ɛnitin apin, if yu tink se yu dɔn tek am pasmak, kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Nashɔnal Ospital wantɛm wantɛm. Ɔ kɛr di pikin go na di ɔspitul we de nia yu Imejɛnsi Dipatmɛnt (ETU) .
Tin dɛn we yu fɔ tink bɔt we yu de du tritmɛnt
Naw, dɛn nɔr no aw dis mɛrɛsin kin gɛt fɔ du wit dis mɛrɛsin. Bɔt fɔ mek yu de na di say we sef, gi yu dɔktɔ wan kɔmplit list fɔ ɛni ɔda mɛrɛsin (inklud vaytamɛn, Panadol), tradishɔnal mɛrɛsin, ɛbul prɔdak ɔ sɔpɔtmɛnt we yu pikin de tek.
Tru di tritmɛnt, di dɔktɔ go wach di pikin in kɔndishɔn gud gud wan. Dis min se dɛn go de chɛk di pikin in mɔsul dɛn trɛnk, muvmɛnt, ɛn ɔl in wɛlbɔdi ɔltɛm.
Wetin na di bad tin dɛn we kin apin to pɔsin?
Lɛk ɛni mɛrɛsin, Eteplirsen kin mek sɔm sayd ɛfɛkt. Bɔt, nɔto ɔlman kin gɛt dɛn. I impɔtant fɔ no bɔt dɛn tin ya. Lɛ wi sheb dɛn sayd ɛfɛkt ya to tu kategori.
| Sayd ɛfɛkt we pɔsin kin gɛt | Diskripshɔn ɛn wetin fɔ du |
|---|---|
| Siriɔs sayd ɛfɛkt dɛm we yu fɔ ripɔt to yu dɔktɔ wantɛm wantɛm | |
| Siriɔs alɛji riakshɔn dɛn |
If yu notis ɛni wan pan dɛn tin ya, na imejensi. Go to dɔktɔ wantɛm wantɛm. |
| Sayd ɛfɛkt dɛn we nɔ kin siriɔs, bɔt dɛn fɔ ripɔt to di dɔktɔ if dɛn kɔntinyu fɔ de | |
| Fɔ vɔmit | Fɔ vɔmit afta yu dɔn tek di mɛrɛsin. |
| Ed de at | Di ed we nɔ kin at to we nɔ kin at. |
| Kɔf | Nyu kɔf ɔ kɔf we dɔn de we dɔn wɔs. |
| Diziz ɛn Lɔs fɔ balans | Diziz ɛn i nɔ kin izi fɔ mek yu balans we yu de waka ɔ tinap. |
If yu pikin gɛt ɛni ɔda tin we nɔ kɔmɔn we dɛn nɔ tɔk bɔt na dis list, tɛl yu dɔktɔ bɔt dɛn bak. Nɔ ignore ɛnitin.
Mɛsej we dɛn kin kɛr go na os
- Eteplirsen na spɛshal tritmɛnt fɔ pikin dɛn we gɛt Duchenne Muscular Dystrophy (DMD) ɛn wan patikyula jɛnɛtik muteshɔn .
- Pan ɔl we dis nɔto mɛrɛsin fɔ di sik, i kin ɛp fɔ kɔntrol di sayn dɛm ɛn slo fɔ mek di mɔsul dɛn wik.
- Dis mɛrɛsin na ɔspitul na wan tren mɛdikal staf de gi am as injɛkshɔn insay wan vein, so natin nɔ de fɔ wɔri bɔt na os.
- Ɛni alɛji we di pikin gɛt ɔ ɛni ɔda mɛrɛsin we di pikin de tekMek shɔ se yu tɛl yu dɔktɔ bɔt am.
- If yu gɛt siriɔs alɛji lɛk fɔ gɛt rɔsh na yu skin ɛn yu fes de swel afta yu dɔn tek di mɛrɛsin, go to dɔktɔ wantɛm wantɛm.
- Tek yu pikin go na ɔspitul di tɛm we yu dɔn plan fɔ du am , ɛn nɔ mis ɛni apɔntinmɛnt. If yu gɛt ɛnitin we de mɔna yu, kɔl di dɔktɔ wantɛm wantɛm.
- If yu gɛt ɛni ɔda kwɛstyɔn bɔt dis tritmɛnt, duya nɔ fred fɔ aks yu dɔktɔ ɛn nɔ shem.
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