If yu ɔ pɔsin we yu lɛk gɛt Beta Thalassemia, sɔntɛm yu no aw i kin taya fɔ gɛt blɔd transfyushɔn ɔltɛm. Bɔt we di tin dɛn we dɛn dɔn lan bɔt mɛrɛsin dɔn go bifo, dɛn dɔn gɛt nyu op naw to dis sik. Tide, wi go tɔk bɔt wan pan dɛn kayn nyu tritmɛnt dɛn de we dɔn rili go bifo. I nem na Betibeglogene Autotemcel. Dɛn kin kɔl am di brand nem ZYNTEGLO.
Fɔ tɔk am simpul wan, wetin na dis Betibeglogene Autotemcel?
Dis nɔto rɔm pil ɔ kapsul. Dis na wan rili spɛshal, advans jin tɛrapi . Di men gol fɔ dis na fɔ ɛp pɔsin we gɛt beta thalassemia in bɔdi fɔ mek rɛd blɔd sɛl dɛn we gɛt wɛlbɔdi ɛn we de wok fayn.
Imajin se wan smɔl bad tin de na di faktri we de mek rɛd blɔd sɛl dɛn na wi bɔdi. Na dat kin apin pan thalassemia. Dis nyu tritmɛnt de ɛp fɔ kɔrɛkt da prɔblɛm de. If i wok fayn, i go rili ridyus di nid fɔ tek blɔd ɔltɛm. Dat go rili fil fayn, nɔto so?
Aw dɛn kin gi dis tritmɛnt?
Dis tritmɛnt we dɛn kin du kin kɔmplikt smɔl. So, dis nɔto sɔntin we pɔsin kin du na os. Dis fɔ bi na ɔspitul, ɔnda di sɔpɔtishɔn fɔ wan tim we gɛt spɛshal dɔktɔ dɛn.
Di tin we impɔtant pas ɔl na dat dɛn kin mek dis tritmɛnt frɔm yu yon sɛl dɛn . Yes, dεn de mכdify di imyun sεl dεm we dεn tek frכm yu na labכtכri we dεn de yuz spεshal prכsεs, gi dεm di abiliti fכ prodyuz hεlty rεd blכd sεl dεm, dεn dεn de put dεm bak insay yu כwn bכdi tru wan vein. Dis na rili wɔndaful teknɔlɔji.
Dɛn kin gi dis tritmɛnt to pikin dɛn we dɔn pas 4 ia. Bɔt i nid fɔ pripia am spɛshal wan ɛn tek tɛm wit am. Yu dɔktɔ go ɛksplen dis to yu.
Di tin we impɔtant pas ɔl: Dis na tritmɛnt we dɛn mek fɔ yu. So, dɛn nɔ go ebul fɔ sheb am wit ɔ gi am to ɛni ɔda pɔsin fɔ ɛni rizin.
Tin dɛm wae yu fɔ tɛl yu dɔktɔ bifo yu bigin tritmɛnt
Bifo yu bigin dis kayn advans tritmɛnt, i rili impɔtant fɔ mek yu dɔktɔ no bɔt yu kɔmplit wɛlbɔdi istri. If ɛni wan pan dɛn tin ya apin to yu, mek shɔ se yu tɛl dɛn bɔt am.
- If yu gɛt sik lɛk HIV ɔ AIDS .
- If yu jɔs dɔn gɛt vaysin , ɔ yu fɔ gɛt wan jisnɔ (espɛshali vaksin we gɛt layf vayrɔs).
- If yu gɛt alɛji fɔ dis mɛrɛsin, ɔda mɛrɛsin, it, day, ɔ tin dɛn we de mek yu nɔ pwɛl.
- If yu gɛt bɛlɛ ɔ yu de tray fɔ gɛt bɛlɛ . (Dis rili impɔtant!)
- If yu na mama we de gi pikin in bɛlɛ .
Tin dɛm wae yu fɔ tek tɛm wit mɔ wae yu de trit yu
Yu mɛdikal tim go de wach yu gud gud wan we yu de tek dis mɛrɛsin ɛn afta dat, ɛn i impɔtant fɔ mek yu no bɔt dɛn tin ya.
Bɛlɛ ɛn kɔntrol fɔ bɔn pikin
Dis na tin we wi nid fɔ tek tɛm gud gud wan.
- Fɔ uman dɛn: If yu gɛt bɛlɛ we yu de tek dis tritmɛnt, dat kin mek yu bɔn siriɔs prɔblɛm. So, dɛn go du tɛst fɔ mek shɔ se yu nɔ gɛt bɛlɛ bifo yu bigin fɔ tek di tritmɛnt. Yu fɔ yuz wan kayn we fɔ kɔntrol pikin, lɛk kɔndɔm ɔ dayafragm, we yu de trit yu ɛn fɔ 6 mɔnt afta yu dɔn stɔp fɔ trit yu.
- Fɔ man: Man we de tek dis tritmɛnt fɔ yuz kɔndɔm if i du mami ɛn dadi biznɛs wit uman we ebul fɔ gɛt bɛlɛ. Yu fɔ kɔntinyu fɔ yuz dis kayn protɛkshɔn fɔ 6 mɔnt afta yu dɔn stɔp fɔ trit yu. Dis na bikɔs if yu patna gɛt bɛlɛ, risk de fɔ mek di pikin we de na in bɛlɛ sɔfa. If yu gɛt ɛni saspek se yu patna gɛt bɛlɛ, tɛl yu dɔktɔ wantɛm wantɛm.
Ɔda impɔtant pɔynt dɛn
- Nɔ gi blɔd: Nɔ gi blɔd we yu de tek dis tritmɛnt ɔ ɛni tɛm afta yu dɔn stɔp am.
- Risk fɔ gɛt kansa: Dis tritmɛnt kin mek yu gɛt sɔm kayn kansa smɔl. Nɔr frayd fɔ dis, bɔt opin yu at ɛn no bɔt dis risk bay wae yu tɔk to yu mɛdikal tim.
- Ɔda mɛrɛsin dɛn: Tɛl yu dɔktɔ bɔt ɔl di mɛrɛsin dɛn we yu de tek (inklud vaytamɛn ɛn ɛbul mɛrɛsin dɛn). Na mɔtalman, dɛn mɛrɛsin ya kin miks wit dis tritmɛnt.
- Granulosayt-koloni stimulat fכktכr
- Ayɔn chelator mɛrɛsin dɛn
- Layf vayrɔs vaysin dɛn
Wetin na di bad tin dɛn we kin apin to pɔsin?
Jɔs lɛk ɛni tritmɛnt, sayd ɛfɛkt kin apin. Sɔm pan dɛn fɔ ripɔt wantɛm wantɛm, ɛn ɔda wan dɛn nɔ kin siriɔs. Wi kin ɔndastand dɛn tin ya klia wan frɔm di tebul we de dɔŋ ya.
| Klasifikɛshɔn fɔ di sayd ɛfɛkt dɛn | |
|---|---|
| 🚨 Tin dɛm fɔ ripɔt to yu mɛdikal tim wantɛm wantɛm | |
| Di sayn dɛn we de sho se pɔsin gɛt alɛji | Skin rash, it, swel na di fes, lip, tong ɔ trot. |
| Di sayn dɛn we de sho se pɔsin de blɔd | Blak ɔ blɔd stɔl, blɔd we de vɔmit we tan lɛk kɔfi grɔn, rɛd/dak brawn urine, smɔl smɔl rɛd/pɔpul spat na di skin, ɛn brus ɔ blɔd we nɔ ɛksplen. |
| Sayn dɛn we de sho se pɔsin gɛt di sik | Fiva, kol, kɔf, trot we de at. |
| 🙂 Tin dɛm fɔ tɛl yu dɔktɔ if dɛn nɔ kin siriɔs, bɔt dɛn kin kɔntinyu fɔ de | |
| Ɔda sayd ɛfɛkt dɛn |
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If yu tink se yu aksidɛntli tek mɛrɛsin, ripɔt am wantɛm wantɛm to di ɔspitul in Imejɛnsi Tritmɛnt Yunit (ETU) . Yu kin kɔntak bak di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Kɔlɔmbɔ Nashɔnal Ospital fɔ advays bɔt dɛn kayn tin ya.
Mɛsej we dɛn kin kɛr go na os
- Betibeglogene Autotemcel na wan jin tɛrapi we rili advans fɔ beta thalassemia we kin ridyus di nid fɔ transfyushɔn blɔd ɔltɛm.
- Dɛn kin mek dis tritmɛnt wit yu yon sɛl dɛn ɛn na wan tim we gɛt spɛshal dɔktɔ dɛn na ɔspitul kin gi am.
- Bifo yu bigin fɔ trit yu, yu fɔ tɛl yu dɔktɔ bɔt ɔl yu wɛlbɔdi infɔmeshɔn, mɛrɛsin dɛn we yu de tek, ɛn alɛji.
- I impɔtant fɔ mek uman ɛn man fala rili strikt we fɔ kɔntrol bɔn pikin we dɛn de trit am ɛn fɔ 6 mɔnt afta dat.
- Nɔ ɛva gi blɔd afta yu dɔn gɛt dis tritmɛnt.
- Nɔ fred fɔ tɔk opin wan wit yu dɔktɔ bɔt ɛni sayd ɛfɛkt ɔ prɔblɛm.
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