Yu ɔ pɔsin we yu sabi gɛt wan sik we nɔ kin apin na yu blɔd we dɛn kɔl Paroxysmal Nocturnal Hemoglobinuria , ɔ PNH fɔ shɔt tɛm? I kin tan lɛk se i kɔmplikt, bɔt fɔ tɔk am simpul wan, na sik we di rɛd blɔd sɛl dɛn na wi bɔdi kin brok bifo tɛm. Dis kin mek yu gɛt bɔku prɔblɛm dɛn lɛk we yu nɔ gɛt bɛtɛ blɔd, yu taya, ɛn yu blɔd kin rɔtin. So tide wi go tɔk bɔt wan vaysin we dɛn kɔl Pegcetacoplan (dɛn kin kɔl am: peg-seta-co-plan) we dɔn briŋ nyu op to bɔku pipul dɛn we gɛt dis sik.
Wetin na Pegcetacoplan? Aw i kin wok?
Tink bɔt wi rɛd blɔd sɛl dɛn as smɔl smɔl motoka dɛn we de kɛr ɔksijɛn ɔlsay na di bɔdi. Insay pɔsin we gɛt PNH, di imyun sistɛm (di ami we de protɛkt wi frɔm sik) kin mistek tink se dɛn rɛd blɔd sɛl ya na di ɛnimi ɛn i kin atak ɛn pwɛl dɛn. dis na bikoz fכ wan pat pan di imyun sistεm we dεn kכl di kכmplimεnt sistεm we nכ de wok fayn .
Dis na di say we wan mɛrɛsin we dɛn kɔl Pegcetacoplan de kam insay.Dis vaysin tan lɛk smat protɛkta. I de wok bay we i de stɔp di pat pan di imyun sistɛm we mistek atak ɛn protɛkt wi rɛd blɔd sɛl dɛn. dis de kכntro di brεk dכn fכ di rεd blכd sεl dεm εn i de ridyus di simptom dεm fכ PNH bכku bכku wan.
Fɔ tɔk am simpul wan, Pegcetacoplan na drɔg we de wok lɛk shild we de protɛkt yu rɛd blɔd sɛl dɛn.
Tin dɛm wae yu fɔ tɛl yu dɔktɔ bifo yu yuse dis mɛrɛsin
Bikɔs dis na impɔtant mɛrɛsin, i impɔtant fɔ tɔk bɔt sɔm tin dɛn opin wan wit yu dɔktɔ bifo yu bigin fɔ trit yu. Fɔ yu yon sef, nɔ ayd dɛn tin ya.
- Yu gɛt ɛni infɛkshɔn naw? Tɛl yu dɔktɔ bɔt ɛni infekshɔn, lɛk fiva, kol, kɔf, ɔ trot we de at.
- Yu gɛt ɛni ɔda alɛji? Nɔto to dis mɛrɛsin nɔmɔ, bɔt to ɛni ɔda mɛrɛsin, it, ɔ tin dɛn we dɛn kin yuz fɔ mek tin nɔ pwɛl, duya tɛl wi bɔt dɛn.
- Yu gɛt bɛlɛ? Ɔ yu de plan fɔ gɛt bɛlɛ? I impɔtant fɔ go to dɔktɔ bifo yu disayd fɔ yuz dis mɛrɛsin we yu gɛt bɛlɛ.
- Yu na mama we de gi pikin in bɛlɛ? Yu fɔ tɔk bak to yu dɔktɔ bɔt aw fɔ yuz dis mɛrɛsin we yu de gi yu mama in bɛlɛ.
Aw fɔ yuz di mɛrɛsin?
Pegcetacoplan na shot we yu kin gi yusɛf na os. Na injɛkshɔn we dɛn kin put ɔnda di bɔdi . I kin tan lɛk se i de mek pɔsin fred smɔl fɔs, bɔt nɔ wɔri.
Bɔku tɛm, yu dɔktɔ ɔ nɔs we tren go sho yu klia wan aw fɔ gi yu dis vaysin fayn fayn wan.
- Aw fɔ pripia wan mɛrɛsin bɔtul.
- Di kɔrɛkt amɔnt fɔ mɛrɛsin fɔ tek insay di sirinj.
- di say dεm we fayn fכ injεkshכn (bכku tεm na di bכdi, di tכŋ εria).
- Aw fɔ klin di skin.
Dɛn go ɛp yu fɔ yus to ɔl dɛn tin ya. Di bɛst tin kin apin we pɔsin gɛt di vaysin lɛk aw di dɔktɔ tɛl am, di de dɛn we dɛn dɔn plan fɔ gi am, ɛn lɛk di sem tɛm .
Fɔ trowe nidul ɛn sirinj dɛn sef wan
Dis rili impɔtant. Nɔ ɛva trowe nidul ɛn sirinj dɛn we yu dɔn yuz na di dɔti we yu kin trowe ɔltɛm. I rili denja fɔ yu, yu famili, ɛn di say we yu de.
Wan spɛshal kɔntena de we gɛt shap shap dɛn we dɛn mek fɔ dis. Yu kin aks yu dɔktɔ ɔ di famasi usay yu kin gɛt yu mɛrɛsin fɔ wan. Aks dɛn aw fɔ trowe di kɔntena fayn fayn wan we i dɔn ful-ɔp.
Tin dɛn we yu fɔ tek tɛm wit we yu de yuz di mɛrɛsin
Yu nid fɔ tek kia smɔl mɔ pan yu wɛlbɔdi we yu de tek dis mɛrɛsin.
- Yu fɔ chɛk yu dɔktɔ ɔltɛm: Bɔku tɛm, yu dɔktɔ go aks yu fɔ mek dɛn chɛk yu blɔd. Mek shɔ se yu du dɛn tin ya fɔ si aw di tritmɛnt de wok. Mek shɔ se yu go na yu dɔktɔ in apɔntinmɛnt.
- Protɛkt yusɛf frɔm infɛkshɔn: Bikɔs dis mɛrɛsin de stɔp di wok we wan pat pan di imyun sistɛm de du, di risk fɔ gɛt sɔm infɛkshɔn kin bɔku smɔl. So, if yu gɛt sɔm sayn dɛn lɛk fiva, kol, trot we de at, kɔf, wund we nɔ de wɛl, ɔ pen we yu de pis , nɔ fɔ tek mɛrɛsin fɔ yusɛf ɛn kɔl yu dɔktɔ wantɛm wantɛm . Nɔ mek yu nɔ go na say dɛn we pipul dɛn sik.
Di sayd ɛfɛkt dɛn we di mɛrɛsin kin gɛt
Lɛk ɛni mɛrɛsin, Pegcetacoplan kin mek sɔm sayd ɛfɛkt dɛn. Sɔm pan dɛn tin ya fɔ ripɔt wantɛm wantɛm, ɛn ɔda wan dɛn nɔ kin rili siriɔs.
| Tayp fɔ di sayd ɛfɛkt | Sayn dɛn |
|---|---|
| Tin dɛn fɔ ripɔt to yu dɔktɔ wantɛm wantɛm | |
| Alɛji Riakshɔn dɛn | Skin rash, it, swel na di fes, lip, tong ɔ trot, i nɔ izi fɔ blo. |
| Sayn dɛn we de sho se pɔsin gɛt di sik | Fiva, kol, kɔf, trot we de at, wund we nɔ de wɛl, infekshɔn na di urinary tract, ɛn malaise. |
| Tin dɛm wae nɔr kin siriɔs, bɔt dɛn fɔ ripɔt to di dɔktɔ if dɛn kɔntinyu fɔ de | |
| Diskɔmfɔt na di say we dɛn injɛkshɔn | Pen, rɛd, ɔ swel smɔl na di say we dɛn injekt am. |
| Ɔda smɔl smɔl tin dɛn we kin ambɔg am | Dayarɛa, taya, bɛlɛ pen. |
Wetin a go du if a mis wan doz fɔ mɛrɛsin?
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 tu dos di sem tɛm.
Wetin a go du if a tek bɔku mɛrɛsin?
If yu tink se yu dɔn tek tumɔs pan dis mɛrɛsin, di tin we yu fɔ du wantɛm wantɛm na fɔ go na di ɔspitul Imejɛnsi Dipatmɛnt (ETU) we de nia yu ɔ kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Kɔlɔmbɔ Nashɔnal Ospital .
Aw fɔ kip di mɛrɛsin?
- Stɔ dis mɛrɛsin na frij . Nɔ kip am na friza/dip-friza.
- Tek di vaysin kɔmɔt na frij lɛk 30 minit bifo yu gi am ɛn lɛ i kam na rum tɛmpracha.
- I bɛtɛ fɔ kip am na di ɔrijinal bɔks we dɛn bin gɛt am insay, fɔ protɛkt am frɔm layt.
- Kip am usay pikin ɛn animal dɛn we yu lɛk nɔ go ebul fɔ rich.
- Nɔ yuz mɛrɛsin we dɔn pas.
Dis mɛrɛsin na fɔ yu nɔmɔ. Na yu dɔktɔ gi yu am, so nɔ sheb am wit ɔda pɔsin.
Mɛsej we dɛn kin kɛr go na os
- Pegcetacoplan na injεkshכn we dεn injεkt כnda di skin we de stכp fכ brok di rεd bכdi sεl dεm na wan blכd sik we nכ kin kכmכt we dεn kכl PNH.
- Bifo yu bigin dis mɛrɛsin, tɛl yu dɔktɔ bɔt ɔl yu mɛrɛsin ɛn alɛji.
- I rili impɔtant fɔ tek di mɛrɛsin di rayt tɛm ɛn di rayt doz.
- If yu gɛt sɔm sayn dɛm fɔ infekshɔn lɛk fiva ɛn kɔf, go to dɔktɔ wantɛm wantɛm.
- Nɔ ɛva trowe nidul ɛn sirinj dɛn we yu dɔn yuz na di dɔti. Yuz wan spɛshal kɔntena (Sharps Container) fɔ dat.
- If yu gɛt ɛni kwɛstyɔn bɔt dis mɛrɛsin, nɔ fred fɔ aks yu dɔktɔ.
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