If yu gɛt ɛmofilia, yu go mɔs no aw i kin mek yu at pwɛl ɛn mek yu fred fɔ blɔd ɔltɛm, sɔntɛnde fɔ natin, ɛn yu kin gɛt prɔblɛm fɔ stɔp
blɔd frɔm ivin di smɔl smɔl tin dɛn we yu kɔt. Yu kin dɔn de tek mɛrɛsin fɔ trit yu blɔd, ɔ yu kin de tek mɛrɛsin fɔ mek i nɔ gɛt am. Bɔt we di sayɛns bɔt mɛrɛsin dɔn go bifo, bɔku nyu tritmɛnt dɛn de naw we go wok fayn fɔ dis sik. So tide, lɛ wi tɔk bɔt wan nyu, difrɛn drɔg. Dɛn kɔl am Qfitlia (fitusiran).
Fɔs, lɛ wi si, wetin mek blɔd nɔ kin stɔp pan ɛmofilia?
Fɔ tɔk am simpul wan, spɛshal prɔtin dɛn de we de ɛp wi blɔd fɔ klɔt. Wi kin kɔl dɛn tin ya
“ klotin factors .” Jɔs lɛk aw dɛn nid mɔta fɔ ol brik dɛn togɛda we dɛn de bil wɔl, na so dɛn tin ya we de mek di blɔd klɔt rili impɔtant fɔ mek blɔd nɔ kɔmɔt. Pɔsin we gɛt ɛmofilia nɔ kin gɛt wan pan dɛn tin ya we kin mek i gɛt blɔd.
- Pipul dɛn we gɛt ɛmofilia A nɔ gɛt wan tin we dɛn kɔl Factor VIII.
- Pipul dɛn we gɛt ɛmofilia B nɔ gɛt wan tin we dɛn kɔl Factor IX.
we dεn tin ya dכn dכn, di prodyushכn fכ wan כda imכtant tin we de mek di bכdi kכlכt, we dεn k
כl trombin , de dכn. Trombin na di men tin we kin dɔn mek blɔd klɔt ɛn stɔp fɔ blɔd. So we di trombin dכn dכn, i kin at fכ stכp di bכdi we i kכmכt. Yu ɔndastand? Bɔku tɛm, wetin wi dɔn de du as tritmɛnt fɔ lɔng tɛm na fɔ mek di klotin factor (factor 8 ɔ 9) we nɔ de na yu bɔdi wit atifishal wan ɛn gi am as
injɛkshɔn insay wan vein. Bɔt di Qfitlia drɔg we wi de tɔk bɔt tide de wok difrɛn we.
So wetin na dis nyu mɛrɛsin we dɛn kɔl Qfitlia (fitusiran)?
Dis na drɔg we de wok na wan rili strenj we. Wi bin dɔn tɔk bɔt di tru tin we se blɔd nid sɔntin we dɛn kɔl trombin fɔ mek i klot. insay wi yon bכdi, כda protin de we de kכntro di prodyushכn fכ dis trombin, dat min se i de stכp fכ mek mכr trombin. Dɛn kɔl am
antithrombin .Tink bɔt am dis we. Yu gɛt wan tin we de mek yu blɔd klɔt (thrombin) na yu bɔdi we de ɛp yu fɔ mek yu blɔd klɔt. Bɔt ɔda tin de (antithrombin) we de kɔntrol ɛn mek i nɔ wok. Insay ɛmofilia, di prodakshɔn fɔ di tin we de ɛp (thrombin) kin smɔl fɔs. So we di tin we de mek di blɔd nɔ wok (antithrombin) de wok nɔmal wan, di blɔd we de klɔt de go dɔŋ mɔ. Wetin Qfitlia de du na
fɔ ridyus di antithrombin we de mek i nɔ ebul fɔ du am. Dɔn, dɛn kin alaw di kayn trombin we yu bɔdi kin mek fɔ wok fayn fayn wan ɛn nɔ go ambɔg am. Dis min se i de yuz di bɔdi in yon sistɛm fɔ ɛnkɔrej blɔd fɔ klɔt, pas fɔ gi yu di blɔd we yu dɔn lɔs. Dis na di fɔs mɛrɛsin we de ridyus di antithrombin we dɛn yuz fɔ mɛn ɛmofilia.
Lɛ wi ɛksplen mɔ bɔt di difrɛns bitwin dɛn tu tritmɛnt ya.
Yu kin ɔndastand dis difrɛns izi wan frɔm di tebul we de dɔŋ ya.
| Di kwaliti we pɔsin gɛt | Tradishɔnal tritmɛnt (Faktɔ Riplesmɛnt) . | Qfitlia (fitusiran) tritmɛnt |
|---|
| Di we aw pɔsin de wok | di klot fכktכ we nכ de na di bכdi dεn de gi am na do. | I de ridyus di antithrombin we de mek di blɔd nɔ klɔt, ɛn i de mek di bɔdi yuz mɔ pan in yon trombin. |
| Aw fɔ gi | Bɔku tɛm, dɛn kin put am insay di bɛlɛ. | Ɔnda di skin (we de ɔnda di skin). |
| Ɔmɔs tɛm | I kin nid fɔ du am bɔku tɛm insay di wik. | Wan tɛm insay di mɔnt ɔ ɛvri tu mɔnt (6-12 tɛm insay di ia). |
| Fɔ di wan dɛn we gɛt inhibitor | Nɔmal faktɔ tɛrapi nɔ de wok, ɛn ɔda spɛshal tritmɛnt dɛn (baypas ɛjɛn) nid fɔ de. | Dis tritmεnt kin yus fayn fayn wan bak pan pipul dεm we gεt inhibito (antibodi dεm we de agens di fכs tin dεm). |
Dis mɛrɛsin fayn fɔ mi ɛn aw a kin yuz am?
If yu gɛt ɛmofilia A ɔ B ɛn yu dɔn pas 12 ia, yu
dɔktɔ kin tink if dis mɛrɛsin fayn fɔ yu. Di tin wae impɔtant pas ɔl na dat dɛn kin yuse am bak pan pipul dɛm wae dɔn gɛt inhibitors (resistance) to previous factor therapy. Bɔt bifo yu bigin dis tritmɛnt, yu dɔktɔ go du bɔku
blɔd tɛst dɛn . 1.
Antithrombin lεvεl: Dis de mכsu aw bכku antithrombin de na yu bכdi. di doz fכ Qfitlia dεn de disayd bay dis valyu. 2.
di wok we di liva de du: Dɛn kin wach yu liva bifo ɛn we dɛn de trit yu. Dɛn kin gi dis mɛrɛsin
as injɛkshɔn ɔnda di skin (subcutaneously). Dis min se dɛn nɔ de gi am insay vein. Yu ɔ pɔsin we de kia fɔ yu kin gi yu na os afta yu dɔn tren. Dɛn kin gi am na di skin na di bɛlɛ, di shɔl, ɔ di bak pat na di ɔp an. Yu fɔ avɔyd say dɛn we gɛt brus ɔ kɔt. If yu dɔn ɔlrɛdi de tek ɔda tritmɛnt fɔ ɛmofilia, yu kin nid fɔ stɔp ɔ chenj dɛn tritmɛnt dɛn de afta yu dɔn bigin Qfitlia. Yu
dɔktɔ go ɛksplen dis to yu klia wan.
Nɔ ɛva stɔp fɔ tek di mɛrɛsin dɛn we yu de tek naw ɔ stɔp fɔ tek Qfitlia we yu nɔ gɛt yu dɔktɔ in advays. If yu du dat, dat kin mek yu gɛt mɔ blɔd.
Yu tink se wi fɔ no bak bɔt di bad tin dɛn we kin apin to wi? Aw wi go mek dɛn nɔ gɛt dɛn?
Lɛk ɛni mɛrɛsin, Qfitlia kin gɛt sɔm sayd ɛfɛkt. E fayn fɔ no bɔt dɛn ɛn tek stɛp fɔ mek dɛn nɔ gɛt dɛn.
- Blɔd Klɔt: Bikɔs dis mɛrɛsin de mek blɔd klɔt, i nɔ kin izi fɔ mek blɔd klɔt we yu nɔ want insay di vein dɛn. Yu dɔktɔ go disayd di rayt doz fɔ yu antithrombin lɛvɛl fɔ ridyus dis risk.
I rili impɔtant fɔ mek yu de du blɔd tɛst ɔltɛm lɛk aw yu dɔktɔ se. Dɛn kin chɛk di antithrombin lɛvɛl na di fɔs, tɔd, fayv, ɛn siks mɔnt we dɛn de trit am. Dis na aw dɛn kin no di rayt doz fɔ yu mɛrɛsin ɛn aw fɔ ridyus dis risk.
- di liva enzym dεm we de εlevεt: Sɔm pipul dεn kin gεt εlevεt liva εnzym dεm . Dis na di rizin we mek dɔktɔ dɛn kin wach aw di liva de ɔltɛm wit blɔd tɛst .
- Galston ɛn Galblad Inflammation: If yu gɛt sɔm sayn dɛn lɛk bad bad bɛlɛ pen, nɔs, ɛn vɔmit , tɛl yu dɔktɔ wantɛm wantɛm.
- Infεkshכn: Sכmכl risk de fכ infεkshכn na di say we dεn injεkt. So, i impɔtant fɔ mek yu injɛkt am klin ɔltɛm ɛn lɛk aw yu dɔktɔ tɛl yu fɔ du am. I impɔtant bak fɔ du gud tin dɛn fɔ klin yu an, lɛk fɔ was yu an ɔltɛm.
Stɔdi dɔn sho se pipul dɛn we gɛt ɛmofilia (ɔl tu di wan dɛn we gɛt ɛn we nɔ gɛt inhibitor) we tek Qfitlia bin gɛt signifyant smɔl blɔd ɛpisod pas di wan dɛn we nɔ tek ɛni prɛvɛntiv tritmɛnt. Dɔn bak, pipul dɛn we gɛt inhibitor we chenj frɔm ɔda tritmɛnt to Qfitlia bin gɛt smɔl blɔd episɔd. Bɔt mɛmba se dɛn tin ya we kin apin kin difrɛn frɔm wan pɔsin to ɔda pɔsin.
Mɛsej we dɛn kin kɛr go na os
- Qfitlia (fitusiran) na nyu tritmɛnt fɔ ɛmofilia A ɛn B we de wok difrɛn we.
- dis de wok bay we i de ridyus di antithrombin we de mek di bכdi nכ kכlכt, insted fכ gi di bכdi in lכw kכlכt fכktכ na do.
- Dis mɛrɛsin na injɛkshɔn ɔnda di skin, nɔto insay vein, ɛn dɛn nɔ kin gi am ɔltɛm, lɛk wan tɛm insay di mɔnt ɔ ɛvri tu mɔnt.
- Yu dɔktɔ go no if dis tritmɛnt fayn fɔ yu afta yu dɔn du bɔku blɔd tɛst.
- Fɔ avɔyd sayd ɛfɛkt, i impɔtant fɔ mek yu du blɔd tɛst (especially antithrombin ɛn liva function) ɔltɛm lɛk aw yu dɔktɔ tɛl yu.
- Nɔ stɔp Qfitlia tritmɛnt we yu nɔ gɛt mɛdikal advays fɔ ɛni rizin.
Ɛmofilia, Ɛmofilia, Qfitlia, fitusiran, blɔd we de klɔt, blɔd we de kɔmɔt, klot faktɔ, antithrombin, ɛmofilia tritmɛnt, nyu mɛrɛsin, sayd ɛfɛkt
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