If pɔsin na yu famili, sɔntɛm yu yon pikin, gɛt wan sik we dɛn kɔl Duchenne muscular dystrophy (DMD), sɔntɛm yu de luk fɔ tritmɛnt fɔ am ɔltɛm. Dis na wan sik we de mek di mɔsul dɛn wik smɔl smɔl. So, wan nyu tritmɛnt fɔ dis na in dɛn kɔl Golodirsen. Insay dis atikul, wi go tɔk bɔt dis mɛrɛsin simpul wan we yu go ɔndastand.
Wetin na dis mɛrɛsin we dɛn kɔl Golodirsen?
Fɔ tɔk am simpul wan, dis na mɛrɛsin we dɛn kin yuz fɔ mɛn Duchenne Muscular Dystrophy (DMD). Naw lɛ wi si aw i de wok.
Imajin se di mɔsul dɛn na wi bɔdi tan lɛk wɔl. di brik dεm we de insay dis wכl na wan protin we dεn kכl ‘dystrophin’, lεk mכta de ol dεm togeda. pan pɔsin we gɛt DMD, dis mɔta, dat na di distrofin protin nɔ de kɔmɔt. So di wɔl we dɛn kɔl mɔsul nɔ strɔng, ɛn smɔl smɔl i kin wik.
Di drɔg we dɛn kɔl Golodirsen de wok bay we i de ɛp di bɔdi fɔ mek dis distrofin protin. Dis kin ɛp fɔ mek di mɔsul dɛn gɛt mɔ trɛnk ɛn kɔntrol aw di sik de go bifo.
Tin dɛn we yu fɔ tɛl yu dɔktɔ bifo yu tek mɛrɛsin
Bifo yu bigin dis tritmɛnt, i rili impɔtant fɔ gi di dɔktɔ kɔmplit diskripshɔn bɔt yu ɔ yu pikin in wɛlbɔdi prɔblɛm. Mek shɔ se yu tɔk mɔ bɔt dɛn tin ya.
- Kidni sik: If yu gɛt ɛni sik we gɛt fɔ du wit kidni, yu fɔ rili tɛl wi bɔt am.
- Alɛji: Tɛl yu dɔktɔ if yu gɛt ɛni alɛji to Golodirsan ɔ ɛni ɔda mɛrɛsin, it, ɔ day.
- If yu gɛt bɛlɛ ɔ yu de tray fɔ gɛt bɛlɛ: If yu gɛt bɛlɛ ɔ yu de plan fɔ bɔn pikin, tɛl yu dɔktɔ.
- If yu na mama we de gi pikin in bɛlɛ: If yu na mama we de gi pikin in bɛlɛ, yu fɔ tɔk bɔt dat bak.
Bay dis infɔmeshɔn, di dɔktɔ go disayd if dis mɛrɛsin fayn fɔ yu ɔ nɔ fayn fɔ yu.
Aw yu kin yuz dis mɛrɛsin?
Dis nɔto mɛrɛsin we yu kin kɛr go na os ɛn yuz am.
Dɛn kin gi dis mɛrɛsin as injɛkshɔn insay wan vein . Na dɔktɔ ɔ nɔs we tren nɔmɔ kin gi am, na ɔspitul ɔ klinik .
So yu nɔ nid fɔ wɔri bɔt di doz ɔ di we aw dɛn de gi am. Di mɛdikal tim go tek kia ɔf dɛn tin dɛn de.
Yu tink se dɛn kin gi pikin dɛn dis mɛrɛsin?
Yɛs, dɛn kin gi dis mɛrɛsin bak to pikin dɛn we gɛt DMD. Bɔt yu dɔktɔ go ɛksplen to yu di tin dɛn we yu fɔ tek tɛm wit ɛn di spɛshal tin dɛn we yu fɔ tink bɔt.
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 tumɔs, kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta wantɛm wantɛm na di Kolombo Nashɔnal Ospital , ɔ go na di Imejɛnsi Tritmɛnt Yunit (ETU) na di ɔspitul we de nia yu.
Impɔtant: Dis mɛrɛsin na fɔ di pɔsin nɔmɔ. Nɔ ɛva gi dis mɛrɛsin to ɛni ɔda pɔsin.
Wetin yu kin du if yu mis wan doz fɔ mɛrɛsin?
Dis na mɛrɛsin we yu nid fɔ tek ɔltɛm, pan wan tɛm we dɛn dɔn sɛt. So, i rili impɔtant fɔ fala di de ɛn tɛm dɛn we yu dɔktɔ gi yu di rayt we. If fɔ sɔm rizin yu nɔ ebul fɔ go di de we dɛn dɔn sɛtul, kɔl yu dɔktɔ ɔ klinik wantɛm wantɛm ɛn mek dɛn no. Dɛn go tɛl yu wetin fɔ du nɛks. Nɔ skip yu mɛrɛsin fɔ ɛni rizin.
Wetin na di bad tin dɛn we kin apin to pɔsin?
Lɛk ɛni mɛrɛsin, di Golodiran vaysin kin mek sɔm sayd ɛfɛkt. Bɔt nɔto ɔlman kin gɛt dɛn. Lɛ wi sheb dɛn tin ya to tu pat.
| Posisibul sayd effekt dɛm fɔ Golodirsen | |
|---|---|
| Siriɔs sayd ɛfɛkt dɛn we nid fɔ go to dɔktɔ wantɛm wantɛm | |
| Alɛji we pɔsin kin gɛt | Di sayn dɛm lɛk we yu skin de rɔsh, it, yu de rɛd, yu fes, yu lip, yu tɔŋ, ɔ yu trot de swel. |
| Kidni injury | di urine we de kכmכt dכn, di ankכl, an, כ fut de swel. |
| Sayd ɛfɛkt dɛn we nɔ kin siriɔs, bɔt dɛn fɔ ripɔt to di dɔktɔ if dɛn kɔntinyu fɔ de | |
| Ed de at | Yu ed kin at ɔltɛm. |
| Fiva | Fɔ fil se yu gɛt fiva. |
| Kɔf ɛn kol | Kɔf, nos we de rɔn, ɔ nos we de stɔp. |
| Prɔblɛm dɛn we de na di dijestiv sistɛm | Bɛlɛ de at, nɔs, vɔmit. |
Dis list nɔ de inklud ɔl di sayd ɛfɛkt dɛn we pɔsin kin gɛt. If yu gɛt ɛni difrɛn tin, tɔk to yu dɔktɔ bɔt am.
Mɛsej we dɛn kin kɛr go na os
- Golodirsen na spɛshal vaysin we dɛn kin yuz fɔ trit Duchenne muscular dystrophy (DMD).
- Dis kin ɛp di bɔdi fɔ mek wan prɔtin we dɛn kɔl distrofin, we impɔtant fɔ di mɔsul dɛn.
- Dɛn kin gi dis mɛrɛsin insay ɔspitul ɔ klinik. So, dɛn nɔ go alaw yu fɔ kɛr am go na os.
- Bifo yu bigin fɔ trit yu, tɛl yu dɔktɔ bɔt ɔl yu mɛrɛsin, mɔ di kidni sik ɛn alɛji.
- If yu gɛt ɛni alɛji lɛk fɔ rash, swel, ɔ simptom we de sho se yu kidni dɔn pwɛl, lɛk we yu nɔ de pul urine, tɛl yu dɔktɔ wantɛm wantɛm .
- Mek shɔ se yu go to dɔktɔ di de ɛn tɛm we i gi yu ɛn gɛt tritmɛnt. Nɔ skip yu mɛrɛsin apɔntinmɛnt dɛn.
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