Yu dɔn ɛva yɛri bɔt wan sik we dɛn kɔl ɛmofilia ? Dis na sik we nɔ kin apin so ɔltɛm bɔt we rili siriɔs. Fɔ tɔk am simpul wan, na tin we di blɔd nɔ kin klɔt fayn fayn wan na wi bɔdi. Dis min se ivin smɔl injuri, fɔdɔm, ɔ kɔt kin mek sɔm tɛm dɛn gɛt bɔku blɔd. Sɔntɛnde, blɔd kin kɔmɔt fɔ insɛf fɔ no rizin.
Wetin rili na ɛmofilia?
Imajin se we wi de blɔd, wi bɔdi gɛt smɔl tim we de wok fɔ stɔp am. Wi de kɔl dɛn wokman ya ‘faktɔ’. Dis na rili spɛshal kayn prɔtin dɛn. Dɛn tin ya kin kam togɛda fɔ mek blɔd klɔt ɛn stɔp di blɔd.
Tu men kayn ɛmofilia de:
- Ɛmofilia A: Dɛn pipul ya nɔ gɛt di prɔtin we dɛn kɔl factor VIII , we dɛn nid fɔ mek blɔd klɔt.
- Ɛmofilia B : Dɛn pipul ya nɔ gɛt wan prɔtin we dɛn kɔl factor IX .
Dis kin bi yu dɔktɔ we kin trit yu di deficient factor intravenously. Dɛn kɔl di tritmɛnt fɔ mek blɔd nɔ kɔmɔt na di bɔdi “prophylaxis,” ɛn di tritmɛnt we blɔd de kɔmɔt na in dɛn kɔl am “on-demand.”
Bot, na smol problem de ya...
Na sɔm sik pipul dɛm, di bɔdi kin bigin fɔ wok agens dɛn tin ya we wi kin gi tru vaksin. I tan lɛk se i tink se dɛn na ɛnimi ɛn atak dɛn. Wi kɔl dis di fɔmɛshɔn fɔ “inhibitors” . We dis kin apin, di pawa fɔ di factor therapy wae wi kin gi kin ridyus. So, fɔ trit pipul dɛn wit dɛn kayn ‘inhibitors’ ya kin kɔmplikt smɔl.
Wetin kin apin wit dis nyu drɔg we dɛn kɔl Alhemo?
Alhemo we de na di wɔl(concizumab-mtci) na nyu mɛrɛsin we dɛn dɔn gri fɔ ridyus ɔ mek i nɔ gɛt blɔd, mɔ pan di wan dɛn we gɛt ɛmofilia A ɔ ɛmofilia B we gɛt di ‘inhibitors’ we wi bin dɔn tɔk bɔt.
Fɔ tɔk am simpul wan, wi bɔdi kin gɛt wan prɔtin we kin mek blɔd nɔ klɔt. Dɛn kɔl am TFPI (Tissue Factor Pathway Inhibitor) . Tink bɔt am lɛk ‘trafik polisman’ na wi bɔdi; i de kɔntrol di we aw di blɔd de klɔt. Wetin Alhemo de du na fɔ intafya smɔl wit di wok we dis ‘kɔp’ we dɛn kɔl TFPI de du. Dɔn, di bɔdi de mek ɔda tin we de ɛp fɔ mek blɔd klɔt (factor Xa), ɛn di ebul fɔ mek blɔd klɔt de bɛtɛ. Dis kin ridyus di risk fɔ blɔd bad bad wan.
Aw fɔ yuz Alhemo?
Alhemo na wan injɛkshɔn we dɛn kin put ɔnda di bɔdi ɛvride . I de insay pen we dɛn dɔn ful-ɔp, so i rili izi fɔ yuz. If yu dɔktɔ disayd se yu kin gi yusɛf dis injɛkshɔn na os, dɛn go sho yu di rayt we aw fɔ du am.
- Doz: Dɛn kin gi di doz we smɔl smɔl (loading dose) di fɔs de we dɛn de trit am. Afta dat, yu fɔ tek di mentenɛns doz we dɛn dɔn tɛl yu fɔ du ɛvride. Dɛn kin no di doz bay yu wet, so yu fɔ tɛl yu dɔktɔ if yu wet chenj.
- Test: Fo wik afta yu bigin fɔ trit yu, yu go gɛt blɔd tɛst fɔ chɛk if di mɛrɛsin we de na yu bɔdi kɔrɛkt. Bay di rizɔlt, yu dɔktɔ kin ajɔst di doz we yu de tek.
- di say dεm we dεn kin gi di vaksin: dεn kin gi di vaksin na di bכdi (2 inch rawnd di nεv) כ di tכŋ. Nɔ injekt na di sem ples ɛvride, bɔt chenj di ples. Nɔ injekt na say dɛn we gɛt pen, brus, rɛd, we gɛt ɛkzema, ɔ we gɛt skata .
Di tin we impɔtant pas ɔl na, nɔ stɔp fɔ tek dis mɛrɛsin we yu nɔ tɔk to yu dɔktɔ. Fɔ mek yu nɔ gɛt blɔd, i rili impɔtant fɔ tek di mɛrɛsin di rayt tɛm ɛvride.
| If insay di fɔs 4 wik | Kɔl yu dɔktɔ wantɛm wantɛm ɛn aks fɔ advays. |
| If yu mis wan doz afta yu dɔn stat di mentenɛns doz | Tek am jɔs lɛk aw yu mɛmba. Tek am di tɛm we yu kin tek am di nɛks de. |
| If yu mis tu to siks (2-6) prea | As yu mɛmba so, it tu tɛm wan tɛm. Frɔm di nɛks de, tek wan it lɛk aw yu kin it. |
| If yu mis sɛvin (7) ɔ mɔ prea | Kɔl yu dɔktɔ wantɛm wantɛm. Yu go nid fɔ tek nyu ‘lɔdin doz’ bak. |
Wetin na di bad tin dɛn we kin apin to pɔsin? Aw fɔ dil wit dɛn?
Lɛk ɛni mɛrɛsin, Alhemo kin gɛt sayd ɛfɛkt.
Kɔmɔn sayd ɛfɛkt dɛn
Bikɔs dis na vaysin, smɔl smɔl riakshɔn dɛn we de na di say we dɛn injɛkshɔn kin apin. Fɔ ɛgzampul:
- Brus, rɛd, it, ɔ blɔd smɔl na di say we dɛn injekt.
- Fɔ ɛp wit dis, yu kin put kol kɔmprɛs na di say.
- Dis kin ridyus bak bay we yu de chenj di say we dɛn de injɛkshɔn ɛvride.
- Nɔ tek ɛni pen kil ɔ ɔda mɛrɛsin we yu nɔ go to yu dɔktɔ.
Siriɔs sayd ɛfɛkt dɛm – tek tɛm mɔ bɔt dis!
Bɔt wan rili siriɔs tin de we wi fɔ no bɔt: i nɔ kin izi fɔ mek blɔd klɔt (thrombosis) fɔm na di blɔd vesel dɛn .
Dɛn an ya we blɔd dɔn klɔt, leg, lɔng, atƆ i kin fɔm na di vein dɛn na say dɛn lɛk di bren. If yu de pripia fɔ ɛni ɔpreshɔn, yu fɔ tɛl yu dɔktɔ bak bɔt am.
If yu gɛt ɛni wan pan dɛn sik ya, go to dɔktɔ wantɛm wantɛm ɛn nɔ go te:
- Di at we de blo
- Chɛst de pen ɔ tayt
- I nɔ kin izi fɔ yu fɔ blo
- I nɔ izi fɔ tɔk, chenj na di vishɔn
- Pen ɔ swel na di leg dɛn
If yu gɛt ɛni wan pan dɛn sik ya, kɔl yu dɔktɔ wantɛm wantɛm, ɔ go na di Imejɛnsi Dipatmɛnt (ETU) na di ɔspitul we de nia yu. Dis rili impɔtant.
Aw yu kin gɛt spɛshal mɛrɛsin lɛk dis?
Alhemo nɔto mɛrɛsin we yu kin bay na rɛgyula famasi. Dis na wan kayn ‘spɛshal mɛrɛsin’. Wan spɛshal we de fɔ gɛt dɛn tin ya.
Afta yu dɔktɔ dɔn gi yu di mɛrɛsin, wan spɛshal famasi go kɔntakt yu. Na dɛn go gi yu di ditel dɛn bɔt aw fɔ mek dɛn ship di mɛrɛsin na yu os. Yu kin nid bak fɔ gɛt ɔtorizeshɔn bifo tɛm frɔm yu inshɔrans kɔmni. Wan ripɔt frɔm di kɔmni we de mek di mɛrɛsin kin ebul fɔ ɛp bak wit dis prɔses. Yu dɔktɔ go gayd yu fɔ du ɔl dis.
Mɛsej we dɛn kin kɛr go na os
- Ɛmofilia na we di blɔd nɔ de rɔtin.
- Alhemo na injɛkshɔn we dɛn kin gi ɛvride fɔ kɔntrol blɔd, mɔ pan di wan dɛn we dɔn gɛt ‘inhibitors’ to factor therapy.
- Nɔ ɛva stɔp fɔ tek dis mɛrɛsin if yu dɔktɔ nɔ advays yu. Tek di doz we dɛn dɔn tɛl yu ɔltɛm.
- Yu fɔ no di siriɔs prɔblɛm we kin mek yu blɔd klɔt. If yu gɛt sɔm kayn sik lɛk aw yu de fil pen na yu chɛst ɔ yu nɔ ebul fɔ blo, go to dɔktɔ ɔ ETU wantɛm wantɛm.
- Bikɔs dis na spɛshal mɛrɛsin, tɔk to yu dɔktɔ bɔt aw fɔ gɛt am ɛn mek shɔ se yu ɔndastand am gud gud wan.











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