If yu ɔr pɔrsin wae yu lɛk gɛt Amyotrophic Lateral Sclerosis (ALS), wi no aw e kin tranga. Fɔ liv wit dis sik, we kin mek di nerve cells we de kɔntrol wi mɔsul dɛn wik smɔl smɔl, nɔ kin izi. So tide wi go tɔk bɔt wan mɛrɛsin wae kin ɛp fɔ kɔntrol ɛn slo fɔ mek dɛn sik ya de wɔs. Dɛn kɔl dis mɛrɛsin Sɔdiɔm Fɛnilbutarayt; Taurursodiol we dɛn kɔl Taurursodiol.
Wetin kin rili apin wit dis mɛrɛsin?
Fɔs, lɛ wi ɔndastand dis. Dis mɛrɛsin nɔto kɔmplit mɛrɛsin fɔ ALS. Bɔt i de du sɔntin we rili impɔtant. Wetin dis drɔg de du na fɔ protɛkt di nerve cells we di sik dɔn pwɛl. Dis we ya, e kin slo fɔ mek de sik nɔr de go bifo. Fɔ tɔk am simpul wan, dis mɛrɛsin kin ɛp fɔ gi sɔm kayn rilif to di pɔsin ɛn kɔntrol aw di sik de go to sɔm mak.
Dɔktɔ dɛn kin tɛl yu dis bak fɔ ɔda mɛrɛsin, so if yu gɛt ɛni kwɛstyɔn bɔt dis, i go fayn fɔ mek yu tɔk to yu dɔktɔ ɛn sɔlv dɛn prɔblɛm dɛn de.
Tin dɛn we yu fɔ tɛl yu dɔktɔ bifo yu tek mɛrɛsin
Bifo yu bigin dis mɛrɛsin, i rili impɔtant fɔ gi yu dɔktɔ kɔmplit diskripshɔn bɔt yu wɛlbɔdi kɔndishɔn. Mek shɔ se yu tɛl am if yu gɛt ɛni wan pan di kɔndishɔn dɛn we de dɔŋ ya.
| Sik ɔ ɔda tin we pɔsin kin gɛt | Wetin mek a fɔ tɛl di dɔktɔ ? |
|---|---|
| Liva sik | Bikɔs di liva impɔtant fɔ pul mɛrɛsin na di bɔdi. |
| Kidni sik | Na bikɔs di kidni dɛn kin filta di mɛrɛsin. |
| At sik (At we nɔ de wok fayn) . | Dis mɛrɛsin gɛt sɔdiɔm, we kin afɛkt di at. |
| Di ay blɔd prɛshɔn | Na bikɔs sɔdiɔm kin mek di blɔd prɛshɔn go ɔp. |
| Di sik we de na di gal blad | Bikɔs sɔm pan di tin dɛn we de insay dis mɛrɛsin kin afɛkt di gal blad. |
| Di sik we de na di pankrias | Bikɔs i kin afɛkt di wok we di pankrias de du. |
| Prɔblɛm dɛn we de na di intestinal | Bikɔs sayd ɛfɛkt dɛn lɛk dayarɛa kin apin. |
| Alɛji to ɔda mɛrɛsin, it ɔ tin dɛn | Fɔ mek yu nɔ mek yu gɛt alɛji. |
| Fɔ gɛt bɛlɛ ɔ fɔ tray fɔ gɛt bɛlɛ | fכ de tink bכt di posbul ifekt dεm pan di pikin we de bכn. |
| Fɔ gi pikin in mama in bɛlɛ | Yu fɔ no se i pɔsibul fɔ mek di mɛrɛsin pas to di pikin tru in mama in milk. |
Aw a fɔ yuz di mɛrɛsin?
I rili impɔtant fɔ no aw fɔ yuz dis mɛrɛsin kɔrɛkt wan.
- Aw fɔ tek am: Dis na mɛrɛsin we dɛn kin tek bay mɔt. Tray fɔ tek am di sem tɛm ɛvride, jɔs lɛk aw yu dɔktɔ tɛl yu fɔ tek am.
- Aw fɔ pripia: Put di paoda frɔm wan mɛrɛsin paket insay wan glas rum tɛmpracha wata (lɛk 240 ml). Dɔn, stir am fayn fayn wan fɔ mek i sɔlv.
- Ustɛm fɔ drink: Drink dis we yu bigin fɔ it ɔ wit snek . Nɔ tek ɛmti bɛlɛ.
- Fɔ stɔp: Kɔntinyu fɔ tek di mɛrɛsin as lɔng as yu dɔktɔ tɛl yu fɔ tek am. Nɔ stɔp af-af.
Atɛnshɔn: If yu tink se yu dɔn tek dis mɛrɛsin tumɔs, dat na fɔ tek am pasmak, kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta wantɛm wantɛm na di Kɔlɔmbɔ Nashɔnal Ospital ɔ go na di Imejɛnsi Tritmɛnt Yunit (ETU) na di ɔspitul we de nia yu. Trit dis lɛk se na imejensi.
Wan ɔda tin, na fɔ yu nɔmɔ dɛn dɔn gi dis mɛrɛsin. Nɔ ɛva sheb am wit ɔda pɔsin, ilɛksɛf da pɔsin de gɛt di sem sayn dɛn we yu gɛt.
Wetin fɔ du if yu mis wan doz fɔ mɛrɛsin?
Nɔ wɔri. If yu mis wan doz, tek am jɔs afta yu mɛmba. Bɔt if i dɔn lɛf smɔl fɔ lɛ yu tek yu nɛks doz, skip di doz we yu mis ɛn tek yu nɛks doz di tɛm we yu dɔn sɛtul. Nɔ ɛva tek dɛbul doz fɔ mek di doz we yu mis.
Ɔda mɛrɛsin dɛm wae kin miks wit dis mɛrɛsin
Sɔm ɔda mɛrɛsin wae yu de tek kin miks wit dis mɛrɛsin. So, i impɔtant fɔ tɛl yu dɔktɔ bɔt ɔl di mɛrɛsin dɛn we yu de tek. Ɛspɛshali if yu de tek ɛni wan pan dɛn mɛrɛsin ya:
- Sɔm tin dɛn we de mek pɔsin nɔ gɛt asid
- Kɔlestayramin we dɛn kɔl
- Kolsevelam we de na di wɔl
- Kɔlestipɔl
- Sayklɔspɔrin we dɛn kɔl
- Probenecid we dɛn kɔl Probenecid
Dis list nɔ de ɔlsay. I impɔtant fɔ tɛl yu dɔktɔ bɔt ɔl di mɛrɛsin dɛn we yu de tek, lɛk di mɛrɛsin dɛn we yu de tek ɛn di mɛrɛsin dɛn we yu nɔ gi yu, vaytamɛn dɛn, ɛbul mɛrɛsin dɛn, ɛn tradishɔnal mɛrɛsin dɛn. I impɔtant bak fɔ tɛl yu dɔktɔ if yu de smok, drink rɔm, ɔ yuz ɔda drɔgs.
Wetin na di bad tin dɛn we kin apin to pɔsin?
Lɛk ɛni mɛrɛsin, dis wan kin mek sɔm bad bad tin dɛn apin. Sɔm pan dɛn siriɔs, sɔm pan dɛn kɔmɔn.
| Tayp fɔ di sayd ɛfɛkt | Sayn dɛn |
|---|---|
| Sayd ɛfɛkt dɛn we yu fɔ ripɔt to yu dɔktɔ wantɛm wantɛm | |
| Alɛji we pɔsin kin gɛt | Skin rash, it, swel na di fes, lip, tong ɔ trot, i nɔ izi fɔ blo. |
| Kɔmɔn sayd ɛfɛkt dɛm wae dɛn fɔ ripɔt to di dɔktɔ if dɛn kɔntinyu ɔr de mɔna yu | |
| Rɔnbɛlɛ | Fɔ mek yu bɔdi wam. |
| Vɔmit | Fɔ fil lɛk se yu de vɔmit. |
| Bɛlɛ de pen | Bɛlɛ pen ɔ nɔ kin fil fayn. |
Dis list nɔ de inklud ɔl di sayd ɛfɛkt dɛn we pɔsin kin gɛt. If yu gɛt ɛnitin we nɔ kɔmɔn apat frɔm dɛn tin ya, go to dɔktɔ.
Aw a fɔ kip di mɛrɛsin? Aw a fɔ pul am?
- Fɔ kip am: Kip dis mɛrɛsin usay pikin ɛn animal dɛn we yu lɛk nɔ go ebul fɔ rich . I bɛtɛ fɔ kip am na rum tɛmpracha (bitwin 20 ɛn 25 digri sɛlshiɔs). Nɔ yuz mɛrɛsin we dɔn pas.
- Aw fɔ trowe am: We yu de trowe mɛrɛsin dɛn we dɔn pas ɔ we yu nɔ nid igen, i impɔtant fɔ du am sef wan. Chek di instrɔkshɔn dɛn we de na di mɛrɛsin paket. If i se i sef fɔ trowe di dɔti, pul di mɛrɛsin kɔmɔt na di kɔntena ɛn miks am wit sɔntin lɛk pusi dɔti, dɔti, ɔ kɔfi grɔn we yu dɔn yuz. Dɔn, put di miksɔp insay bag we dɛn tayt ɛn trowe am na di dɔti. If yu nɔ shɔ, aks yu dɔktɔ fɔ advays.
Mɛsej we dɛn kin kɛr go na os
- Dis mɛrɛsin (Sodium Phenylbutyrate; Taurursodiol) nɔ de mɛn ALS, bɔt i de ɛp fɔ slo di rit we di sik dɛn kin wɔs.
- Tek yu mɛrɛsin ɔltɛm wit it, lɛk aw yu dɔktɔ tɛl yu fɔ it.
- Tɛl yu dɔktɔ bɔt ɔl di ɔda mɛrɛsin dɛn we yu de tek ɛn ɛni ɔda mɛrɛsin we yu gɛt (espɛshali liva, kidni, ɔ at sik).
- If sayn dɛm fɔ alɛji (skin rash, swelling) apin, go to dɔktɔ wantɛm wantɛm.
- If yu tek di mɛrɛsin pasmak, go wantɛm wantɛm na di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta ɔ di ɔspitul Imejɛnsi Dipatmɛnt (ETU) we de nia yu.
- Dis mɛrɛsin na fɔ yu nɔmɔ. Nɔ ɛva sheb am wit ɔda pipul dɛn.
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