We yu kɔt smɔl, di blɔd kin stɔp afta sɔm tɛm, nɔto so? Dis na bikɔs ɔf wan wɔndaful we aw wi bɔdi de wok. Bɔt fɔ sɔm pipul dɛn, blɔd nɔ kin stɔp dis izi wan. Ivin we pɔsin kɔt am smɔl, i kin mek i kɔntinyu fɔ blɔd. Tide, wi go tɔk bɔt wan sik we dɛn kɔl ɛmofilia, we bɔku pipul dɛn dɔn yɛri bɔt bɔt nɔ rili no bɔt. Bifo wi fred bɔt am, lɛ wi ɔndastand wetin i bi.
Aw yu go no if yu gɛt ɛmofilia?
Fɔ tɔk am simpul wan, ɛnisay we blɔd de na wi bɔdi, sɔntin lɛk ‘plɔg’ kin fɔm fɔ stɔp di blɔd. Wi kin kɔl dis fibrin klot. Fɔ mek dis klɔt, bɔku spɛshal prɔtin dɛn na wi blɔd nid fɔ wok togɛda. Dis na wetin wi kin kɔl "clotting factors."
εmofilia na wan kכndyushכn we wan pan dεn kכlכt fכktכ dεm, spεshal fכktכ VIII כ fכktכ IX, nכ de כ rεdכks frכm we dεn bכn am. Dɔn, di blɔd klɔt nɔ kin fɔm fayn, ɛn di blɔd kin kɔntinyu we i nɔ stɔp.
If yu dɔktɔ tink se yu gɛt dis sik, dɛn go du bɔku tɛst pan yu blɔd.
- Fɔs step: Dɛn tek wan sɛmpul pan yu blɔd ɛn di lab de tɛst aw lɔng i tek fɔ mek i klot.
- Step 2: If dɛn tɛst dɛn de sho ɛni abnɔmal tin, dɛn go du mɔ spɛshal tɛst fɔ si ɔmɔs factor VIII ɛn factor IX de na yu blɔd.
Dɛn tɛst ya kin ɛp yu dɔktɔ fɔ no uskayn kayn ɛmofilia yu gɛt (Ɛmofilia A ɔ B), ɛn aw i siriɔs.
Wetin na di tritmɛnt fɔ ɛmofilia?
Di tritmɛnt fɔ ɛmofilia kin difrɛn difrɛn wan bay di kayn ɛn aw di sik wae yu gɛt. Fɔ ɛgzampul, if yu gɛt smɔl ɛmofilia , yu kin jɔs nid tritmɛnt afta yu wund ɔ bifo dɛn du yu ɔpreshɔn.
Bɔt if yu gɛt siriɔs ɛmofilia , usay yu kin blɔd bɔku tɛm, yu go nid fɔ kɔntinyu fɔ tek tritmɛnt ɔltɛm fɔ mek yu nɔ blɔd ɛn fɔ mek yu jɔyn dɛn nɔ pwɛl ɛn wik.
Bɔku men we dɛn de fɔ trit pɔsin:
- Riples di depleted clotting factor (Riplɛsmɛnt tɛrapi) .
- Ɔda patikyula mɛrɛsin dɛn
- Tritmɛnt fɔ di sayd ɛfɛkt dɛm lɛk fɔ blɔd insay di jɔyn dɛm
Fɔ gi di deficient klotin factor
Dis na di men tritmɛnt. dis involv fכ gi yu bכdi wan dכz fכ di klot fכktכ we nכ de tru wan vein (intravenously כ IV).
- Factor VIII fɔ pipul dɛn we gɛt ɛmofilia AGi.
- Dɛn kin gi Factor IX to pipul dɛn we gɛt ɛmofilia B.
Dɛn kin mek dɛn tin ya tu we dɛn. Wan pan dɛn kɔmɔt frɔm blɔd plasma we dɛn gi . di כda wan na sεntetik כ rεkombinεnt DNA fכktכ dεm we dεn mek na di labכtכri . Dɛn mek di nyu kayn tin dɛn we de tide fɔ de fɔ lɔng tɛm na di bɔdi. So, dɛn nɔ nid fɔ injekt dɛn ɔltɛm lɛk aw dɛn bin de du am trade.
Ɔda patikyula mɛrɛsin dɛn
Apat frɔm di tritmɛnt we dɛn kɔl clotting factor therapy, ɔda mɛrɛsin dɛn de we dɛn kin yuz tide we kin ɛp fɔ kɔntrol di blɔd we de kɔmɔt. Yu dɔktɔ go ɛksplen dɛn tin ya to yu.
| Drug (nem fɔ di brand) . | Fɔ udat dɛn? | Impɔtant pɔynt dɛn |
|---|---|---|
| Emicizumab-kxwh (HEMLIBRA) we de mek di bɔdi. | Fɔ pipul dɛn we gɛt ɛmofilia A | I kin ɛp fɔ mek blɔd nɔ kɔmɔt. Dɛn nɔ kin gi dis insay di bɛlɛ, bɔt dɛn kin gi am ɔnda injɛkshɔn wan tɛm insay di wik. |
| Drug dɛn lɛk Adynovate, Idelvion | Fɔ pipul dɛn we gɛt ɛmofilia A ɔ B | dis na impruv sεntetik fכktכ dεm we dεn gi insted fכ Faktכ VIII כ IX. Dɛn tin ya kin de na di bɔdi fɔ lɔng tɛm. |
| Desmoprɛsin (DDAVP) we dɛn kɔl . | Fɔ pipul dɛn we gɛt mild ɛmofilia A | Dis mεdikeshכn de inkrεs di bכdi in lεvεl dεm fכ factor VIII fכ sכm tεm. Dɛn kin gi am insay di bɛlɛ, as injɛkshɔn, ɔ as sprɛy na in nos. |
| Tranexamic asid, Aminokaproik asid | Insay spɛshal kes dɛn | Dis na mɛrɛsin dɛn we dɛn kin tek insay pil fɔm. Dɛn kin wok bay we dɛn kin stɔp wan blɔd we de klɔt fɔ mek i nɔ sɔlv izi wan. |
| Obizur bin de du | Fɔ pipul dɛm wae gɛt akwyayz ɛmofilia A | Dis na spɛshal kɔndishɔn. I nɔto sɔntin we dɛn bɔn yu wit. I kin divεlכp leta na layf bikoz fכ tin dεm lεk bεlε εn kεnsar. Dɛn kin trit am wit wan kayn factor VIII we dɛn kin gɛt frɔm pig. |
Yu fɔ no se blɔd de kɔmɔt na di jɔyn dɛn ɛn ɔda prɔblɛm dɛn.
Wan kɔmɔn sayn fɔ ɛmofilia na we blɔd de kɔmɔt na di jɔyn dɛn . Dis kin apin na say dεm lεk di kכn, εlbo, εn ankכl. We dis kin apin, di jɔyn kin swel ɛn i kin fil pen.
- Tritmɛnt: I impɔtant fɔ gɛt yu factor tritmɛnt wantɛm wantɛm. If nɔto dat, di jɔyn kin pwɛl fɔ ɔltɛm. Apat frɔm dat, yu dɔktɔ go advays yu fɔ rɛst di jɔyn ɛn put ays . Dis go mek di pen ɛn swel nɔ bɔku.
- Afta dat: Afta di pen dɔn stɔp, dɛn kin tɛl yu bak fɔ du fizik tritmɛnt fɔ ɛp fɔ mek di jɔyn dɛn ebul fɔ muv ɛn gɛt trɛnk bak.
Dɔn bak, yu nid fɔ tek tɛm wit di tin dɛn we yu de du. Nɔto ɔl spɔt dɛn fayn fɔ pɔsin we gɛt ɛmofilia. Denja, kɔntakt spɔt kin mek yu blɔd kɔmɔt insay yu bɔdi. Tɔk to yu dɔktɔ fɔ disayd us ɛgzampul ɛn spɔt dɛn we fayn fɔ yu ɛn we nɔ fayn fɔ yu.
Yu tink se di tritmɛnt dɛn kin mek pɔsin gɛt prɔblɛm?
Pan ɔl we di tritmɛnt dɛn rili sef tide, tu tin dɛn de we yu fɔ no.
1. Sik dɛn we pɔsin kin gɛt frɔm blɔd
Trade, arawnd di 1980 dɛm, dɛn bin gɛt bɔku risk fɔ gɛt vayrɔs lɛk HIV ɛn epataytis frɔm tin dɛm we de kɔmɔt frɔm blɔd. Bɔt naw yu nɔ nid fɔ wɔri bɔt dat. Naw, dɛn kin chɛk di wan dɛn we de gi blɔd gud gud wan, ɛn dɛn kin tɛst ɔl di blɔd we dɛn gi fɔ si if dɛn gɛt vayrɔs ɛn klin am bay we dɛn de yuz spɛshal we dɛn. So naw di risk fɔ gɛt sik frɔm tritmɛnt dɔn rili smɔl. Bɔt dɔktɔ dɛn kin se yu fɔ tek di vaysin fɔ mek yu nɔ gɛt epataytis A ɛn B.
2. Chenj dεm na di imyun sistεm (Inhibitors) .
Dis na tin we kɔmplikt smɔl, bɔt i impɔtant fɔ ɔndastand. sכmtεm, wi bכdi in imyun sistεm, we na wi bכdi in difεns sistεm, de no dis kכlכtin fכs we wi de gi am as ‘εnεmi’. Dɔn, i kin bigin fɔ pwɛl da tin de. wi kכl dis di fכmeshכn fכ "inhibitors" . If dis kin apin, di tritmɛnt we yu de tek nɔ go wok fayn. So, yu dɔktɔ go de tɛst yu blɔd ɔltɛm fɔ si if dis kin apin.
Mɛsej we dɛn kin kɛr go na os
- Ɛmofilia na wan sik we dɛn bɔn wit we kin afɛkt di we aw blɔd kin klɔt.
- di men tritmεnt na fכ gi εksojen fכktכ VIII כ IX, we nכ de na di bכdi.
- Yu dɔktɔ go disayd di bɛst tritmɛnt fɔ yu, i go dipen pan di kayn sik ɛn aw yu sik.
- Blɔd we de kɔmɔt na di jɔyn dɛn na kɔmɔn tin, ɛn if i apin, i rili impɔtant fɔ go to tritmɛnt kwik kwik wan.
- Di tritmɛnt dɛm fɔ ɛmofilia we dɛn de gi tide rili sef. Nɔ fred dɛn we yu nɔ nid fɔ fred.
- If yu ɔ yu pikin gɛt dis sik, woke klos wit yu dɔktɔ ɔltɛm ɛn fala in advays.
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