We yu gɛt smɔl wund na yu bɔdi, ɔ we yu pul yu tut, yu tink se di blɔd kin kɔntinyu fɔ kɔmɔt ɛn nɔ stɔp? Ɔ sɔntɛnde yu kin gɛt blu brus na yu bɔdi we yu nɔ kin bit ɛnisay? Yu kin si brus ɔlsay na yu bɔdi, mɔ we yu smɔl pikin bigin fɔ kray ɔ waka? If tin dɛn lɛk dis apin, di tin we kin mek i apin kin bi wan sik we dɛn kɔl ɛmofilia . Nɔ fred we yu yɛri dis nem. If yu gi yu di rayt tritmɛnt , yu go ebul fɔ liv nɔmal, ful layf. Lɛ wi tɔk bɔt dis klia wan ɛn simpul wan tide.
Fɔ tɔk am simpul wan, wetin na Ɛmofilia A?
Fɔ tɔk am simpul wan, Ɛmofilia A na wan sik we wi blɔd nɔ kin klɔt fayn. Nɔmal wan, we wi gɛt injuri, wi blɔd kin klɔt fɔ stɔp di blɔd. Dis na spɛshal prɔtin dɛn we de na wi blɔd de ɛp am. Wi kin kɔl dɛn tin ya "klotin factors."
Pɔsin we gɛt ɛmofilia A nɔ de prodyuz inof di klotin factor Factor VIII . di kayn we aw di sik de bi na di digri we dis Factor VIII protin de ridyus. Fɔ fala dis, dɛn sheb am to tri pat:
- Mild hemophilia: Factor VIII lεvεl dεm de de te to sכm mak.
- mכdarεt εmofilia: di fכktכ VIII lεvεl dεm rili lכw.
- Sivεr εmofilia: Factor VIII lεvεl dεm rili lכw כ nכ de.
Bɔrku tɛm, dis na sik wae de kam wit jɛnɛtiks wae de rɔn na famili. Bɔt, na lɛk wan pat pan tri pipul dɛn, nyu pɔsin kin gɛt dis sik ɛn nɔbɔdi na di famili nɔ kin gɛt am.
Wetin kin mek pɔsin gɛt ɛmofilia?
Dis na sɔntin we wi kin gɛt tru di jin dɛn. Tink bɔt am, ɔl di kwaliti dɛn we wi bɔdi gɛt, na di jin dɛn de sho am. uman gεt tu X kromozom (XX), we man gεt wan X kromozom εn wan Y kromozom (XY).
di jin dεfεkt we de asai fכ εmofilia de na di X kromozom .
So, if mama na "carrier" fכ dis difεktiv jin, i nכ kin sho di simptom dεm. biכs in כda hεlty X kromozom de mek di fכktכ VIII protin we nid. Bɔt if in bɔy pikin gɛt dis X kromozom we nɔ fayn, da bɔy pikin de go gɛt ɛmofilia. Na bikɔs na wan X kromozom nɔmɔ bɔy pikin gɛt. Fɔ dis rizin, ɛmofilia kin bɔku pan bɔy pikin dɛn pas gyal pikin dɛn.
Na smɔl tɛm nɔmɔ, big pipul dɛn we ol bitwin 60 ɛn 80 ia kin gɛt ɛmofilia. I kin apin we di bɔdi in imyun sistɛm atak di wɛlbɔdi tin dɛn we de mek di blɔd klɔt. I kin apin bak we uman gɛt bɛlɛ, wit kansa , ɛn wit ɔda ɔtoimyun kɔndishɔn dɛn.
Wetin na di sayn dɛm fɔ ɛmofilia?
Di sayn dɛm kin dipen pan if yu sik nɔr kin pasmak, nɔr kin pasmak, ɔr kin tranga.
| Di lɛvɛl we di sik de | Di tin dɛn we pɔsin kin si |
|---|---|
| Mild ɛmofilia | Bɔku tɛm, bɔku blɔd kin jɔs apin afta dɛn dɔn du ɔpreshɔn, pul in tut, bɔn pikin, ɔ siriɔs aksidɛnt. Sɔm pipul dɛn nɔ kin ivin no se dɛn gɛt am te dɛn big. |
| Mɔdaret ɛmofilia | - We yu wund, blɔd de kɔmɔt pasmak. - Sɔntɛnde, blɔd kin kɔmɔt fɔ natin. - Di bɔdi de brus izi wan ɛn tɔn blu. - We yu gɛt vaysin, i kin tek lɔng tɛm fɔ mek yu blɔd kɔmɔt. |
| Sivɛri ɛmofilia | Bɔku tɛm, blɔd kin apin ivin if pɔsin nɔ wund. Blɔd kin apin mɔ na di jɔyn ɛn mɔsul dɛn . Dis kin rili mek pɔsin fil pen. |
Wonin sayn dɛm fɔ se blɔd de kɔmɔt na yu bren
If pɔsin we gɛt siriɔs ɛmofilia gɛt ivin smɔl blo na in ed, blɔd kin kɔmɔt na in bren. Dis na siriɔs imejensi. If yu gɛt ed injury ɛn ɛni wan pan dɛn sayn ya, kɔl yu dɔktɔ wantɛm wantɛm ɔ go to di imejensi dipatmɛnt (ETU) we de nia yu.
- Siriv ed pen we de kɔntinyu fɔ de
- Fɔ vɔmit
- I kin slip ɔltɛm ɔ i kin taya pasmak
- Wikɛd tin wantɛm wantɛm ɔ i nɔ kin izi fɔ waka
- Dabl vishɔn
- Di sik dɛn we kin mek pɔsin sik
Aw fɔ no di sik?
If pɔsin na yu famili gɛt ɛmofilia, yu kin mek dɛn tɛst yu pikin fɔ di sik we yu gɛt bɛlɛ. Bɔt sɔm prɔblɛm dɛn de we kin apin we dɛn de du dɛn tɛst ya, so yu fɔ tɔk bɔt dɛn wit yu dɔktɔ.
Dɛn kin no se dɛn gɛt siriɔs ɛmofilia pan yɔŋ pikin dɛn insay di fɔs ia we dɛn de liv. If yu pikin bigin fɔ rol ɛn bigin fɔ kray ɛn bigin fɔ notis se brus dɛn dɔn rayz na in bɔdi, tɔk to yu dɔktɔ bɔt am.
Di dɔktɔ kin aks yu kwɛstyɔn dɛn lɛk dɛn wan ya:
- Aw dɛn brus ɛn blɔd ya bin apin?
- Aw lɔng di blɔd dɔn de go?
- Ɛni mɛrɛsin de fɔ pikin dɛn fɔ tek?
- Yu tink se ɛnibɔdi na yu famili gɛt prɔblɛm wit blɔd we de klɔt?
Dɔn, dɛn go du bɔku blɔd tɛst fɔ no if pɔsin gɛt di sik. Dɛn kin sɛn yu bak to dɔktɔ we de mɛn yu blɔd.
| Test Nem | Wetin yu si pan dis? |
|---|---|
| Kɔmplit Blɔd Kɔnt (CBC) . | Dɛn kin chɛk di kayn sɛl dɛn we de na di blɔd ɛn di lɛvɛl we di ɛmoglobin de. Dis kin ɛp fɔ no if anemia de bikɔs ɔf blɔd. |
| PT ɛn aPTT tɛst dɛn | I de mɛzhɔ aw lɔng i tek fɔ mek blɔd klɔt. di aPTT valyu kin כlwayz εlevεt pan εmofilia. |
| Factor VIII ɛn Factor IX tɛst dɛn | Dɛn kin mɛzhɔ ɛksaktɔli ɔmɔs pan dis prɔtin de insay di blɔd. If factor VIII smɔl, na ɛmofilia A. |
| Tɛst fɔ Jɛnɛtiks | Dɛn kin no di jenɛtik muteshɔn we de mek di sik. If na uman, dɛn kin no bak if na in gɛt di sik. |
Aw dɛn kin trit am?
Di we aw dɛn de trit am, dipen pan aw di sik bad, yu ej, ɛn wetin yu nid. di men gol fכ di tritmεnt na fכ riples di fכktכ VIII protin we nכ de na di bכdi. Dɛn kɔl dis faktɔ riplesmɛnt tɛrapi . Pan ɔl we dis nɔ kin mɛn di sik kpatakpata, i kin ɛp fɔ kɔntrol di blɔd ɛn mek yu liv nɔmal layf.
Tu kayn tritmɛnt de:
- Prɔfylaktik Tɛrapi: Dɛn kin injɛkt factor VIII ɔltɛm pan wan schedule fɔ mek yu nɔ gɛt blɔd, pas fɔ wet fɔ mek blɔd kɔmɔt. Dis impɔtant mɔ fɔ pipul dɛn we gɛt siriɔs ɛmofilia.
- On-demand Therapy: Fɔ gɛt tritmɛnt nɔmɔ we blɔd de kɔmɔt .
Tu kayn factor VIII vaysin dɛn de:
1. Rikombinεnt Fכktכ VIII: Fכktכ we dεn prodyuz na di labכtכri we de yuz jεnεtik εnjinia. Dis na di wan we dɛn kin yuz mɔ tide.
2. Faktor VIII we kכmכt frכm plasma: Fכktכ we dεn gεt frכm mכtalman blכd plasma.
Pipul dɛn we gɛt smɔl to mɔdaret ɛmofilia A kin yuz wan mɛrɛsin bak we dɛn kɔl Desmopressin (DDAVP) . dis de wok bay we i de rilis di fכktכ VIII we dεn stכr insay di bכdi.
Apat frɔm dat, dɛn kin yuz mɛrɛsin dɛn we dɛn kin it lɛk Tranexamic Acid, we kin mek di blɔd nɔ brok, dɛn kin yuz am bak pan tin dɛn lɛk fɔ pul di tut.
Impɔtant: Bikɔs pɔsin we gɛt ɛmofilia kin nid fɔ tek blɔd bɔku tɛm, i rili impɔtant fɔ gɛt di vaysin agens Epataytis A ɛn B. Aks yu dɔktɔ bɔt dis.
Aw yu de manej yu layf ɛvride?
We yu de liv wit ɛmofilia, yu fɔ tink smɔl mɔ bɔt sef.
- Bi aktif: Ɛksesaiz de mek yu mɔsul dɛn strɔng. Strɔng mɔsul dɛn de gi gud protɛkshɔn fɔ di jɔyn dɛn. Bɔt nɔ du kɔntakt spɔt lɛk rɔgbi ɛn bɔksin. Swim, waka, ɛn baysikul (wit ɛlmɛt) na fayn tin dɛn fɔ du. Tɔk to yu dɔktɔ bɔt us aktiviti dɛn we fayn fɔ yu.
- Protɛkt pikin dɛn: If yu gɛt smɔl pikin, wɛr knee pad, elbow pad, ɛn ɛlmɛt we yu de ple. Protɛkt yusɛf frɔm fɔnicha dɛn we gɛt shap ed na yu os.
- Dental wɛlbɔdi biznɛs:Mek yu tit fayn fayn wan. Brush yu tit ɛvride. Dis kin ɛp fɔ ridyus di nid fɔ pul di tut ɛn big big tritmɛnt fɔ dɛn tit. Bifo yu go to di dɛntist, mek shɔ se yu tɛl am se yu gɛt ɛmofilia.
- Mεdikeshכn dεm we yu nכ fכ tek: Pen kil lεk aspirin εn NSAID (e.g., ibuprofen, diclofenac) kin mek blɔd kכlכt mכr. Nɔ tek ɛni mɛrɛsin we yu nɔ go to yu dɔktɔ.
Mɛsej we dɛn kin kɛr go na os
- Ɛmofilia A na wan sik we de kɔmɔt frɔm di jɛnɛtiks we pɔsin kin gɛt we i nɔ gɛt di Factor VIII protin we i nid fɔ mek di blɔd klɔt.
- Dis kin bi mɔs pan bɔy pikin dɛm, bɔt uman kin bi pipul dɛm wae gɛt dis sik.
- Di men sayn dɛm na fɔ blɔd pasmak frɔm ivin smɔl injuri ɛn brus we nɔ nid.
- If yu gɛt injury na yu ed ɛn yu gɛt sɔm sayn dɛm lɛk yu ed we de at bad bad wan, yu de vɔmit, ɔ yu de slip, na imejensi. Go to dɔktɔ wantɛm wantɛm.
- If dɛn gi di rayt tritmɛnt (Factor Replacement Therapy) ɛn sef layf, pipul dɛn we gɛt ɛmofilia kin liv ful, aktif layf.
- Ɔltɛm tɔk bɔt ɔl di mɛrɛsin dɛn we yu de tek wit yu dɔktɔ bifo yu du ɛni ɔpreshɔn ɔ tritmɛnt fɔ yu tit.
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