Yu kin gɛt pen bak we yu nɔ go ebul fɔ bia ɛn yu skin kin bɔn we yu de na di san? Fɔ sɔm pipul dɛm, dis nɔr nɔrmal, ɛn e kin bi sayn fɔ wan sik wae nɔr kin bɔrku wae dɛn kɔl Erythropoietic Protoporphyria (EPP) . Fɔ pɔsin we gɛt dis sik, di san we de shayn kin rili mek i fil pen. Tide, wi go tɔk bɔt wan spɛshal mɛrɛsin we dɛn kin gi fɔ ɛp dɛn kayn pipul ya, bɔt wit di we aw dɛn kin du am we difrɛn smɔl.
Wetin na Afamelanotide injɛkshɔn?
Fɔ tɔk am simpul wan, Afamelanotide na wan mɛrɛsin we de ɛp fɔ ridyus di damej we yu skin kin gɛt frɔm di san ɛn di pen we i kin mek yu gɛt. Dɛn kin yuz am spɛshal fɔ pipul dɛn we gɛt di sik we wi bin dɔn tɔk bɔt we dɛn kɔl Erythropoietic Protoporphyria (EPP).
Imajin, EPP na wan sik wae nɔr kin bɔrku wae kin kam wit wan jenɛtik kɔz. insay dis, wan kεmikכl we dεn kכl ‘protoporphyrin’ na wi bכdi de kכmכt bכku bכku wan na di bכdi. We dɛn pipul ya kin go na di san, da kemikal de kin wok ɛn i kin pwɛl di skin, ɛn dis kin mek di skin fil bad bad wan ɛn i kin gɛt inflamɛns. Di drɔg we dɛn kɔl Afamelanotide de wok bay we i de mek di skin in protɛktiv pigmɛnt (melanin) bɔku ɛn i de mek i ebul fɔ bia wit di san. So, i pɔsibul fɔ go na do to sɔm mak ɛn nɔ gɛt pen. Dɛn kin sɛl dis mɛrɛsin ɔnda di nem SCENESSE .
Tin dɛm wae yu fɔ tɛl yu dɔktɔ bifo yu du dis tritmɛnt
Dis nɔto pil ɔ krim. Na smɔl tin we dɛn kin put ɔnda di skin. So, e fayn fɔ tɔk to yu dɔktɔ opin wan bifo yu bigin dis tritmɛnt. Mek shɔ se yu tɛl am bɔt dɛn tin ya.
- Bɔt yu alɛji: Mek shɔ se yu tɛl wi if yu gɛt ɛni alɛji, nɔto jɔs to Afamelanotide, bɔt to ɛni ɔda mɛrɛsin, it, tin we de mek yu nɔ gɛt tin fɔ it, ɔ kɔla.
- If yu gɛt bɛlɛ ɔ yu de tray fɔ gɛt bɛlɛ: Dɛn nɔ no gud gud wan yet aw dis mɛrɛsin go afɛkt di bɛlɛ. So i impɔtant fɔ tɛl yu dɔktɔ if yu gɛt bɛlɛ ɔ yu de wet fɔ bɔn pikin insay di nɛks tɛm.
- If yu na mama we de gi pikin in mama in bɛlɛ: Dɛn nɔ no if dis mɛrɛsin de pas insay mama in milk. So, fɔ mek yu pikin sef, tɛl yu dɔktɔ if yu na mama we de gi pikin in bɛlɛ bifo yu gɛt tritmɛnt.
Aw yu kin yuz dis mɛrɛsin?
Dis nɔto mɛrɛsin we yu kin kɛr go na os. Dis na smɔl tin we dɛn kin put insay pɔsin in bɔdi. Dis implant, we saiz lɛk wan gren rays, na dɔktɔ we tren kin tek tɛm put am ɔnda di skin na yu bɛlɛ .
- Di say we dɛn put am fɔ klin ɛn dray fɔ 24 awa . Dis min se i nɔ fɔ de na wata.
- Bɔku tɛm, afta tu mɔntDi dɔktɔ go pul di ol implant. If yu nid fɔ kɔntinyu fɔ gɛt tritmɛnt, dɛn kin put nyu implant bak na in ples.
- Yu fɔ tek tɛm spɛshal we yu de gi pikin dɛn dis mɛrɛsin, so tɔk to yu dɔktɔ we de mɛn pikin dɛn bɔt am.
Impɔtant notis: Dɛn dɔn gi yu dis mɛrɛsin fɔ yu nɔmɔ. Nɔ sheb am wit ɛni ɔda pɔsin fɔ ɛni rizin.
Wetin fɔ du we ɛnitin apin we nɔ izi fɔ du?
Mɛmba se if yu tink se yu dɔn tek dis mɛrɛsin pasmak, nɔ panik. Go na ɔspitul Imejɛnsi Yunit (ETU) wantɛm wantɛm. Ɔ, kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Kɔlɔmbɔ Nashɔnal Ospital fɔ advays.
Tin dɛn we yu fɔ tink bɔt we yu de du tritmɛnt
E fayn fɔ tek kia ɔf yu bɔdi smɔl we yu de du dis tritmɛnt.
- Fɔ chɛk-ap ɔltɛm na di dɔktɔ: Mek shɔ se yu go chɛk-ap di de dɛn we yu dɔktɔ gi yu. Tɛl yu dɔktɔ if yu sik nɔr de bɛtɛ ɔr if i tan lɛk se dɛn de wɔs.
- Fɔ chɛk yu skin: Dis mɛrɛsin kin mek yu skin, yu bɔdi, yu bɔdi, ɛn yu bɔdi dak. So i impɔtant fɔ mek dɔktɔ chɛk yu wan ol skin tu tɛm insay di ia .
- Implant expulsion: Na sכm tεm, dis implant, we de כnda di skin, kin kכmכt (dεn) insεf. If yu tink se di implant dɔn kɔmɔt, kɔl yu dɔktɔ wantɛm wantɛm.
Sayd ɛfɛkt dɛn we kin apin bikɔs ɔf mɛrɛsin
Jɔs lɛk ɛni ɔda mɛrɛsin, sɔm sayd ɛfɛkt dɛn de we pɔsin kin gɛt. Lɛ wi tek wan luk pan wetin dɛn bi. Wi kin sheb dɛn tin ya to tu men grup dɛn.
| Tayp fɔ di sayd ɛfɛkt | Tɔk bɔt |
|---|---|
| Tin dɛn fɔ tɛl yu dɔktɔ wantɛm wantɛm | |
| Alɛji we pɔsin kin gɛt | Skin rash, it ɔ rash, swel na di fes, lip ɔ tong. |
| Pen na di say we dɛn put am na di bɔdi | Pen we de mek pɔsin fil bad na di say we dɛn put am insay. |
| Tin dɛm wae nɔr kin siriɔs, bɔt dɛn fɔ ripɔt to di dɔktɔ if dɛn kɔntinyu fɔ de | |
| Difrɛn tin dɛn we de apin | Kɔf, diziz, slip, nɔs, taya. |
| Chenj dɛn we de apin na di say we dɛn put di implant | Rɛd ɔ smɔl pen/bɔn na di say we dɛn put am. |
Dis list nɔ de inklud ɔl di sayd ɛfɛkt dɛn we pɔsin kin gɛt. If yu notis ɛnitin we nɔ kɔmɔn, duya kɔntak yu dɔktɔ fɔ advays.
Prɔblɛm kin de wit ɔda mɛrɛsin dɛn?
Naw, no ripɔt nɔr de bɔt dis mɛrɛsin wae de mek pɔrsin gɛt intarakshɔn wit ɔda mɛrɛsin dɛm. Bɔt dat nɔ min se yu nɔ nid fɔ tɛl yu dɔktɔ bɔt ɛvri mɛrɛsin we yu de tek.
Gi yu dɔktɔ wan list fɔ ɔl wetin yu de yuz. I fɔ gɛt dɛn tin ya:
- Prɛskrishɔn drɔgs fɔ ɔda sik dɛn
- Drug dɛn we nɔ gɛt prɛskrishɔn
- Tradishonal mɛrɛsin, ɛvbɔdi
- Vitamin ɛn tin dɛn we dɛn kin yuz fɔ it
Apat frɔm dat, mek shɔ se yu tɛl yu dɔktɔ if yu de smok, drink rɔm, ɔ yuz ɔda drɔgs we nɔ rayt. Sɔm tin kin miks wit yu mɛrɛsin.
Mɛsej we dɛn kin kɛr go na os
- Afamelanotide na spɛshal mɛrɛsin we de ridyus di pen we di skin kin fil we di san kin fil we wan sik we nɔ kin apin so ɔltɛm we dɛn kɔl Erythropoietic Protoporphyria (EPP).
- Dis nɔto mɛrɛsin we yu kin kɛr go na os, bɔt na smɔl tin we dɛn kin put ɔnda di skin we dɔktɔ we dɔn tren kin put.
- Bifo yu bigin fɔ trit yu, tɛl yu dɔktɔ bɔt ɔl di alɛji dɛn we yu gɛt, ilɛksɛf yu gɛt bɛlɛ ɔ yu de gi pikin bɔbi, ɛn ɔl di mɛrɛsin dɛn we yu de tek.
- We yu de du tritmɛnt, no if ɛnitin chenj na yu skin kɔlɔ. Chek yu skin tu tɛm insay di ia. If di implant fɔdɔm fɔ insɛf, tɛl yu dɔktɔ wantɛm wantɛm.
- If yu gɛt siriɔs alɛji, lɛk we yu fes de swel, go to dɔktɔ wantɛm wantɛm.
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