We yu gɛt smɔl wund, di blɔd kin stɔp afta sɔm tɛm, nɔto so? Dat na bikɔs ɔf wan wɔndaful difens mɛkanism na wi bɔdi. Bɔt fɔ sɔm pipul dɛn, dis we aw blɔd de klɔt nɔ kin apin fayn. Ivin smɔl wund kin mek pɔsin kɔntinyu fɔ blɔd. Tide wi de tɔk bɔt ɛmofilia, we na wan sik we pɔsin kin gɛt frɔm in mama ɛn papa we kin mek blɔd nɔ kin klɔt fayn.
Aw a go no if a gɛt ɛmofilia?
Fɔ tɔk am simpul wan, we wi bɔdi bigin fɔ blɔd, wan chen we gɛt kemikal dɛn kin bigin fɔ stɔp am. di εnd risal fכ dis na di fכmeshכn fכ wan bכdi kכlכt (Fibrin kכlכt). Bɔku spɛshal prɔtin dɛn we de na wi blɔd kin ɛp fɔ mek dis blɔd klɔt. Wi kin kɔl dɛn tin ya "klotin factors" ɔ Clotting Factors .
Ɛmofilia na wan sik we pɔsin kin gɛt frɔm in mama ɛn papa we kin mek wan pan di tin dɛn we kin mek di blɔd klɔt, mɔ Factor VIII ɔ Factor IX, nɔ de ɔ i kin ridyus in kwantiti. Dis min se di blɔd nɔ de klɔt nɔmal wan.
If dɔktɔ tink se yu gɛt ɛmofilia, dɛn go du yu bɔku blɔd tɛst fɔ si aw yu blɔd de klɔt fayn fayn wan. Dɛn tɛst ya na:
- Dɛn kin tek wan sɛmpul pan yu blɔd, miks am wit spɛshal kemikal dɛn na lab, dɔn dɛn kin tɛst am fɔ si if blɔd kin klɔt, ɛn if na so, aw i kin fɔm kwik kwik wan.
- If dɛn tɛst ya nɔrmal, yu go gɛt mɔ spɛshal blɔd tɛst fɔ no di lɛvɛl we Factor VIII ɛn Factor IX de na yu blɔd.
Dɛn tɛst ya go ɛp yu dɔktɔ fɔ no uskayn kayn ɛmofilia yu gɛt (A ɔ B) ɛn aw i bad.
Wetin na di tritmɛnt fɔ ɛmofilia?
Bɔku tritmɛnt dɛn de fɔ ɛp pɔsin we gɛt ɛmofilia. Di kayn tritmɛnt we yu nid go dipen pan di kayn ɛmofilia we yu gɛt ɛn aw i siriɔs.
Fɔ ɛgzampul, if yu gɛt smɔl ɛmofilia, yu kin jɔs nid tritmɛnt we yu gɛt injury ɔ we yu de rɛdi fɔ ɔpreshɔn. Bɔt if yu gɛt siriɔs ɛmofilia ɛn yu de blɔd bɔku tɛm, yu kin nid fɔ gɛt tritmɛnt ɔltɛm fɔ mek yu nɔ blɔd ɛn protɛkt yu jɔyn dɛn frɔm difɔmeshɔn ɛn disabled.
Di men we dɛn fɔ trit am na dɛn wan ya:
| Di we aw dɛn kin trit am | Wan simpul ɛksplen |
|---|---|
| Fɔ gi tin dɛn we de mek blɔd klɔt (Factor Replacement Therapy) . | fכ gi di mis כ lכw bכdi kכlכt fכktכ (Factor VIII כ IX) tru wan vein (intravenous) na di men tritmεnt. |
| Ɔda kayn drɔgs dɛn | Gi ɔda mɛrɛsin fɔ ɛp fɔ kɔntrol di blɔd, ilɛksɛf na tin dɛn we de mek blɔd klɔt ɔ atɔl. |
| Tritmɛnt fɔ di jɔyn dɛn we de blɔd ɛn ɔda prɔblɛm dɛn | Kɔntrol di jɔyn dɛn we de pwɛl bikɔs ɔf di blɔd we de kɔmɔt ɔltɛm, di fisiotɛrapi, ɛn di chenj we dɛn de chenj di we aw dɛn de liv dɛn layf. |
Lɛ wi tek tɛm luk di patikyula mɛrɛsin dɛn we dɛn kin yuz.
Dɛn kin gi pipul dɛn we gɛt ɛmofilia A factor VIII, ɛn dɛn kin gi pipul dɛn we gɛt ɛmofilia B factor IX. Dɛn kin mek dɛn tin ya tu men we dɛn:
1. Blɔd plasma we dɛn gi
2. Sεntetik/Rεkombinεnt DNA-dεrivεd
Naw dɛn dɔn mek nyu kayn tin dɛn fɔ de na di bɔdi fɔ lɔng tɛm, we min se dɛn nɔ nid fɔ tek bɔku injɛkshɔn pas aw i bin de bifo.
| Nem fɔ di drɔg | Yuz ɛn di we aw i de wok |
|---|---|
| Emicizumab-kxwh (HEMLIBRA) we de mek di bɔdi. | Na drɔg we dɛn kin gi fɔ mek pipul dɛn we gɛt ɛmofilia A nɔ blɔd ɔ ridyus blɔd.I kin wok bay we i de riples di factor VIII we nɔ de difrɛn we. Dɛn kin gi am as injɛkshɔn we dɛn kin put ɔnda di bɔdi wan tɛm insay di wik. |
| Desmoprɛsin (DDAVP) we dɛn kɔl . | Wan mɛrɛsin we dɛn kin gi pipul dɛn we gɛt mild ɛmofilia A. I kin mek di factor VIII bɔku na di blɔd fɔ sɔm tɛm. Dɛn kin gi am insay di bɛlɛ, bay injɛkshɔn, ɔ as sprɛy na in nos. |
| Antifibrinolytic drɔgs dɛn we dɛn kin yuz (e.g. Tranexamic asid) . | Dis na mɛrɛsin wae yu kin tek as pils. Dɛn kin wok bay we dɛn kin mek wan blɔd we dɔn klɔt nɔ sɔlv kwik kwik wan. Sɔntɛnde, dɛn kin yuz dɛn togɛda wit factor therapy. |
| Obizur bin de du | Dis na wan kayn factor VIII we dɛn kin gɛt frɔm pig. Dɛn nɔ kin yuz am fɔ mɛn ɛmofilia we pɔsin kin gɛt frɔm in mama ɛn papa, bɔt dɛn kin yuz am fɔ trit wan sik we nɔ kin apin leta we dɛn kɔl Acquired Haemophilia A. Dis sik kin kam bikɔs i gɛt bɛlɛ, kansa, ɔ sɔm mɛrɛsin dɛn. |
Ɔda tin dɛn ɛn manejmɛnt
Wi nid fɔ pe atɛnshɔn bak to sɔm ɔda prɔblɛm dɛn we kin kam wit ɛmofilia.
Di jɔyn dɛn we de blɔd
Dis na di siriɔs prɔblɛm we kin kam wit ɛmofilia. We blɔd de kɔmɔt na di jɔyn dɛn lɛk di ni, di ɛlb, ɔ di anklɛ, i impɔtant fɔ gɛt factor therapy wantɛm wantɛm. If dɛn nɔ du dis, di jɔyn kin pwɛl sote go, ɛn dis kin mek i fil pen, swel, ɛn i nɔ kin izi fɔ muv as tɛm de go. We blɔd de kɔmɔt, rɛst ɛn ays di jɔyn lɛk aw yu dɔktɔ tɛl yu. Afta di pen ɛn swel dɔn stɔp, fisiotɛrapi rili impɔtant fɔ mek di jɔyn muv bak ɛn gɛt trɛnk.
Di tin dɛn we yu de du fɔ yu bɔdi
If yu gɛt ɛmofilia, dat nɔ min se yu fɔ de na os ɔltɛm. Bɔt i fayn fɔ mek yu nɔ de wit kɔntakt spɔt dɛn we kin mek yu wund. Fɔ ɛgzampul, spɔt dɛn lɛk rɔgbi ɛn bɔksin nɔ fayn. Bɔt ɛksesaiz lɛk fɔ swim, waka, ɛn baysikul (insay sef we) kin rili fayn fɔ di bɔdi. I bɛtɛ fɔ tɔk to yu dɔktɔ bɔt us ɛgzampul dɛn we fayn fɔ yu ɛn wetin yu nɔ fɔ du.
Wetin na di prɔblɛm dɛn we kin apin we dɛn de trit am?
Pan ɔl we di tritmɛnt dɛn we dɛn de gi naw rili sef, tu prɔblɛm dɛn de we wi fɔ no bɔt.
1. Sik we pɔsin kin gɛt frɔm blɔd: Trade, insay di 1970 ɛn 1980 dɛm, dɛn bin gɛt bɔku risk fɔ transmit vayrɔs lɛk HIV ɛn epataytis tru blɔd-based factor therapy. Bɔt naw, nid nɔ de fɔ wɔri bɔt dat.Naw, dɛn kin rili chɛk di wan dɛn we de gi blɔd. Dɛn kin tɛst ɔl di blɔd fɔ si if i gɛt vayrɔs ɛn afta dat dɛn kin trit am wit spɛshal we fɔ mek dɛn nɔ wok bifo dɛn yuz am fɔ mek mɛrɛsin. So di risk dɔn rili smɔl naw. Bɔt as pɔsin we gɛt ɛmofilia, i rili impɔtant fɔ gɛt vaysin agens epataytis A ɛn B.
2. Imyun sistεm de chenj (Inhibitors): sכmtεm, wi bכdi in imyun sistεm de mistek di fכktכ protin we wi de gi frכm do as ‘εnεmi’ εn bigin fכ atak am. Wi kɔl dis di fɔmɛshɔn fɔ inhibito dɛn . Dɔn di factor therapy we wi de gi nɔ de wok fayn. Dis na tin we kɔmplikt smɔl. Na dat mek yu dɔktɔ go de tɛst yu (ɔ yu pikin) blɔd ɔltɛm fɔ si if dis kayn tin de apin.
Mɛsej we dɛn kin kɛr go na os
- Emofilia na wan sik we dɛn kin gɛt frɔm dɛn mama ɛn papa we kin mek pɔsin blɔd klɔt. di tu men tכp dεm na εmofilia A (Fכktכ VIII dεfisiεns) εn εmofilia B (Fכktכ IX dεfisiεns).
- Dɛn kin no di sik bay we dɛn de du sɔm patikyula blɔd tɛst.
- Di men tritmɛnt na fɔ gi di bɔdi wan tin we de mek di blɔd klɔt we nɔ de ɔ we de dɔŋ tru wan vein.
- Di tritmɛnt dɛn we dɛn de yuz tide rili sef ɛn dɛn kin wok fayn. Di prɔblɛm dɛn we bin de trade dɔn dɔn bɔku pan dɛn.
- If blɔd de kɔmɔt insay di jɔyn, i impɔtant fɔ go to dɔktɔ wantɛm wantɛm. Dis kin ɛp fɔ mek di jɔyn nɔ pwɛl sote go.
- Ɔltɛm tɔk to yu dɔktɔ bɔt aw fɔ liv yu layf ɛn aw fɔ du ɛksɛsayz we fayn fɔ yu. I rili impɔtant fɔ fala yu dɔktɔ in advays.
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