We yu gɛt smɔl wund ɔ yu nak sɔmsay, di blɔd kin stɔp afta sɔm tɛm, nɔto so? Dat na bikɔs ɔf di natura l prɔses we blɔd kin klɔt na wi bɔdi. Bɔt tink bɔt am, sɔm pipul dɛn nɔ kin stɔp fɔ blɔd dis izi wan. Ivin we dɛn gɛt smɔl wund, dɛn kin blɔd fɔ lɔng tɛm. Di bɔdi kin tɔn blu ɛn brus. Di tin we kin mek pɔsin gɛt dis sik kin bi wan sik we dɛn kɔl ɛmofilia. Pan ɔl we bɔku pipul dɛn nɔ no di rayt tin bɔt dis, dis na sɔntin we impɔtant we wi fɔ no. Lɛ wi tɔk bɔt dis simpul wan, di we we yu go ɔndastand.
Wetin rili na ɛmofilia?
Fɔ tɔk am simpul wan, ɛmofilia na wan sik we nɔ kin apin so ɔltɛm we wi blɔd nɔ kin klɔt fayn. Wi blɔd gɛt spɛshal prɔtin dɛn we de ɛp fɔ stɔp blɔd we i bigin fɔ kɔmɔt. 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 mek wan ɔ mɔ pan dɛn tin ya we kin mek pɔsin blɔd klɔt. Dis min se ivin we pɔsin kɔt am smɔl, i kin mek i blɔd fɔ lɔng tɛm. Sɔntɛnde, blɔd kin kɔmɔt insay di bɔdi, mɔ na di jɔyn ɛn mɔsul dɛn. Dis kin mek pɔsin in layf de pan denja.
Dɔktɔ dɛn kin sheb aw dis sik kin tranga to tri pat, i kin dipen pan di kayn tin dɛn we kin mek di blɔd klɔt.
- Mild hemophilia: Blɔd kin kɔmɔt afta big big injury ɔ ɔpreshɔn.
- Moderate hemophilia: Ivin smɔl injury kin mek yu blɔd bɔku. Di bɔdi kin ivin tɔn blu.
- Siviɔs ɛmofilia: Blɔd kin kɔmɔt insay ɛn na do, ivin fɔ no rizin.
Pan ɔl we no kɔmplit mɛrɛsin nɔ de fɔ dis, wit di nyu tritmɛnt dɛn we de, i pɔsibul fɔ kɔntrol di blɔd ɛn liv bɔku pan di nɔmal layf.
Yu tink se men kayn ɛmofilia de?
Yɛs, tri men kayn dis sik de. Dɛn kin bay di kayn tin we de mek di bɔdi klɔt we nɔ de na di bɔdi. Fɔ ɔndastand dis klia wan, luk di tebul we de dɔŋ ya.
| Di kayn sik we dɛn kɔl ɛmofilia | Tɔk bɔt |
|---|---|
| Ɛmofilia A | Dis na di kayn we we pipul dɛn kin gɛt mɔ. I kin apin we di blɔd klot factor 8, ɔ Factor VIII nɔ de. |
| Ɛmofilia B | Dis kayn kin apin we di blɔd klot factor 9, ɔ Factor IX nɔ de. |
| Ɛmofilia we dɛn kɔl C | Dis na di kayn we we nɔ kin bɔku. I kin kam bikɔs di blɔd klɔt factor 11, ɔ Factor XI , nɔ de. |
Wetin na di sayn dɛm fɔ dis sik?
Di men sayn dɛm we de sho se pɔsin gɛt ɛmofilia na we i nɔ kɔmɔn ɔ we i de blɔd pasmak ɛn we i de brus. Aw dɛn sik ya kin tranga kin dipen pan if yu gɛt smɔl, smɔl ɔr siriɔs ɛmofilia.
Blɔd we de kɔmɔt pasmak
Imajin, yu gɛt blɔd na yu nos wantɛm wantɛm fɔ natin. Ɔ ivin we yu kɔt yu finga smɔl ɔ afta yu dɔn ɔpreshɔn yu, di blɔd nɔ kin stɔp fɔ lɔng tɛm. If smɔl pikin gɛt dis sik, dɛn kin ivin put tɔys na dɛn mɔt ɛn blɔd.
Brus we de mek pɔsin brus
Wi skin kin tɔn blu we blɔd de flɔ ɔnda am. Pipul dɛn we gɛt ɛmofilia kin tɔn blu ɛn brus izi wan, ilɛksɛf smɔl tin bit dɛn. if sכm pikin hit dεn ed sכmsay, dεn kin gεt big big bכdi we dεn kכl "goose eggs."
Jɔyn Pen ɛn Swel
Dis na di siriɔs prɔblɛm we kin kam wit ɛmofilia. Blɔd kin kɔmɔt insay di bɔdi, mɔ na di jɔyn dɛn lɛk di ni, di ɛlb, ɛn di anklɛ. Dɔn di jɔyn dɛn kin swel, dɛn kin fil pen, ɛn dɛn kin wam we dɛn tɔch dɛn. We dis kin apin to yɔŋ bebi dɛn, dɛn kin kray ɔltɛm, nɔ kin gri fɔ nil dɔŋ, ɔ waka.
I rili impɔtant: Nɔto ɔltɛm, siriɔs ɛmofilia kin mek blɔd kɔmɔt na di bren. Dis kin mek pɔsin in layf de pan denja. If yu gɛt sɔm sayn dɛn lɛk ed we de at bad bad wan we nɔ de chenj, we yu de si tu tɛm, ɔ we yu taya pasmak , dɛn tin ya kin bi sayn fɔ se yu bren de blɔd. If yu gɛt ɛmofilia ɛn yu gɛt dɛn sik ya, go na ɔspitul imejensi rum (ETU) wantɛm wantɛm.
Wetin kin mek pɔsin gɛt ɛmofilia?
Bɔku tɛm, ɛmofilia na wan sik we pɔsin kin gɛt we i kam pan jɛnɛreshɔn to ɔda jɛnɛreshɔn.Dat min se na bikɔs di jin dɛn we wi kin gɛt frɔm wi mama ɔ papa kin chenj. Lɛ wi ɔndastand dis smɔl mɔ simpul wan.
Dɛn kin tɛl wi bɔdi fɔ mek tin dɛn we de mek di bɔdi klɔt bay di jin dɛn. We chenj ɔ difrɛns de na dɛn jin ya, dɛn instrɔkshɔn dɛn de nɔ de wok fayn. di rizulεt na dat di bכdi nכ de prodyuz di כmכnt fכ kכlכt fכktכ dεm we i nid.
dis jεnεtik difεkt de na di X kromozom.
- Wan gyal pikin gɛt tu X kromozom (XX), wan na in mama ɛn wan na in papa.
- Bɔy pikin gɛt wan X kromozom ɛn wan Y kromozom (XY). Di X kɔmɔt frɔm di mama ɛn di Y kɔmɔt frɔm di papa.
Naw luk aw dis de go dɔŋ frɔm di jɛnɛreshɔn dɛn:
- if mama kכri X kromozom wit dis jin we nכ de wok fayn (wi kin kכl am ‘kכriכg'), i nכ kin sho di simptom dεm biכs i gεt di כda hεlty X kromozom.
- If dis mama in pikin gɛt di X kromozom we nɔ fayn, i go gɛt ɛmofilia bikɔs i nɔ gɛt ɔda wɛlbɔdi X kromozom fɔ kɔntrol am.
- If dis mama in gyal pikin gɛt di X kromozom we nɔ fayn, insɛf go bi pɔsin we de kɛr am. I kin sho sɔm kayn sayn dɛn we nɔ kin izi fɔ am, lɛk we i kin gɛt bɔku blɔd we i de gɛt we i de in mɔnt.
sכmtεm, εmofilia kin divεlכp fכ insεf, we i nכ kin gεt am, as a rizulta fכ wan spontan jin chenj we di pikin de liv. Dɔn bak, i nɔ kin apin so ɔltɛm, i kin apin we pɔsin in imyun sistɛm atak in yon tin dɛn we de mek i nɔ gɛt wata. Wi kin kɔl dis ‘akwyayz ɛmofilia’.
Aw dɔktɔ kin no bɔt dis?
If yu ɔ yu pikin gɛt dɛn sik ya, yu dɔktɔ go fɔs chɛk yu ɛn aks if ɛnibɔdi na yu famili dɔn gɛt dɛn sik ya. Dɔn, dɛn go ɔda sɔm blɔd tɛst fɔ kɔnfirm dis.
- Kɔmplit Blɔd Kɔnt (CBC): I de mɛzhɔ di kayn ɛn di kayn sɛl dɛn we de na yu blɔd.
- Prothrombin Time test (PT): I de chɛk aw lɔng i tek fɔ mek yu blɔd klot.
- Partial Thromboplastin Time test (PTT): Dis na ɔda tɛst we de mɛzhɔ di tɛm we blɔd de klɔt.
- Spɛsifi k Klɔtin Fakta Tɛst: Dis na wetin de sho ustɛm yu nɔ gɛt bɛtɛ tin fɔ klot ɛn aw i smɔl.
Wetin na di tritmɛnt dɛm fɔ dis?
Di tritmɛnt we yu go gɛt go dipen pan di kayn ɛmofilia we yu gɛt ɛn aw yu sik bad. Di men tritmɛnt na riplesmɛnt tɛrapi.
Fɔ tɔk am simpul wan, dis min fɔ gi yu bɔdi wan shot fɔ wan tin we de mek yu blɔd klɔt we nɔ de na yu blɔd. Dɛn kin mek dɛn tin ya we kin mek pɔsin blɔd klɔt frɔm mɔtalman blɔd plasma ɔ dɛn kin mek am na lɛbɔtri. Dis tritmɛnt kin ɛp fɔ mek yu nɔ gɛt blɔd ɛn stɔp am kwik if i apin.
Apat frɔm dat, bɔku nyu tritmɛnt dɛn de naw:
- Drug dεm lεk Marstacimab-hncq (Hympavzi®) εn Concizumab (Alhemo®) : dεn ya de blכk wan protin we de mek blכd kכlכt εn de mek wan εnzym we de εp bכdi kכlכt.
- Fitusiran (Qfitlia®): Dis drɔg de stɔp wi liva fɔ mek wan tin (antithrombin) we de mek blɔd nɔ klɔt.
- Jin Tɛrapi: Dis na di tritmɛnt we pas ɔl. insay dis, dεn de put wan hεlty jin insay di bכdi fכ tek di jin we nכ de wok fayn, we de mek di bכdi prodyuz di tin dεm we nid fכ kכlכt.
If yu gɛt ɛmofilia, yu fɔ avɔyd fɔ tek tin dɛn we de mek yu fil pen lɛk aspirin ɛn ibuprofen, ɛn tin dɛn we de mek yu blɔd tan lɛk ɛparin ɔ wɔfarin. Mek shɔ se yu tɔk to yu dɔktɔ bɔt dis.
Ustɛm yu fɔ go to dɔktɔ wantɛm wantɛm?
If yu notis ɛni chenj na yu bɔdi, lɛk we yu de blɔd mɔ ɛn mɔ ɔ yu de brus, tɛl yu dɔktɔ wantɛm wantɛm. Dɔn bak, if yu gɛt ɛni wan pan dɛn siriɔs sayn ya, go na ɔspitul in Imejɛnsi Dipatmɛnt (ETU) ɛn nɔ de te.
| Imejɛnsi Situeshɔn dɛn | |
|---|---|
| Yu ed kin at bad bad wan, yu nɔ kin si fayn, ɔ yu kin taya pasmak | Dis kin bi sayn fɔ se blɔd de kɔmɔt na di bren. Go na di ETU wantɛm wantɛm. |
| Siriv swel ɛn pen we yu nɔ go ebul fɔ bia na wan jɔyn | Dis na bad bad blɔd we de kɔmɔt na wan jɔyn. Go na di ETU wantɛm wantɛm. |
Tin dɛn fɔ no we yu de liv wit ɛmofilia
Ɛmofilia na sik we pɔsin kin gɛt we i de liv in layf, ɔ we nɔ de mɛn. So yu go nid fɔ gɛt mɛrɛsin ɛn fɔ wach yu ɔlsay na yu layf. Bɔt nɔ wɔri. Wit nyu tritmɛnt, pɔrsin wae gɛt ɛmofilia kin liv in layf lɛk pɔrsin wae nɔr gɛt dis sik.
Na sɔm tin wae kin ɛp yu fɔ fil fayn wae yu de liv wit dis sik:
- Kɔntrol yu wet: As yu de gɛt mɔ wet, di prɛshɔn we de pan yu jɔyn dɛn de go ɔp. Fɔ mek yu gɛt wɛlbɔdi wet impɔtant fɔ protɛkt di jɔyn dɛn we dɔn ɔlrɛdi pwɛl bikɔs blɔd de kɔmɔt insay di jɔyn dɛn.
- Tek kia ɔf yu tit gud gud wan: I impɔtant fɔ brus yu tit fayn ɛn tek kia ɔf yu tit wɛlbɔdi. Bikɔs di tin dɛn we dɛn kin du lɛk fɔ pul di tut ɛn fɔ pul di rut kanal kin mek pɔsin blɔd kɔmɔt, i bɛtɛ fɔ avɔyd dɛn.
- Tink bɔt mɛntɛl hεlth: If yu liv wit wan sik wae nɔr de dɔn, dat kin mek yu wɔri ɛn pwɛl hat. Tɔk to yu dɔktɔ bɔt dis ɛn go to mental wɛlbɔdi advays if nid de.
- Bi aktif sef: Fɔ du tin dɛm wae de ridyus di risk fɔ injuri na gud tin fɔ yu bɔdi ɛn maynd. Aks yu dɔktɔ us ɛgzampul dɛn we fayn fɔ yu.
We yu gɛt ɛmofilia, ivin smɔl injury we ɔda pipul dɛn nɔ go notis kin bi big prɔblɛm fɔ yu. If yu ni bɔmp na tebul leg, dat kin mek yu blɔd kɔmɔt na yu jɔyn. Nɔs blɔd nɔ kin stɔp ivin afta yu sniz tranga wan. Fɔ liv wit dis sik kin tranga. Bɔt mɛmba se nɔto yu wangren de. Yu mɛdikal tim de ɔltɛm fɔ ɛp yu.
Mɛsej we dɛn kin kɛr go na os
- Ɛmofilia na wan sik we pɔsin kin gɛt frɔm in mama ɛn papa we di blɔd nɔ kin klɔt fayn.
- dis de bi fכ di dכn pan wan kayn protin we dεn kכl "clotting factors" na di bכdi.
- Di men sayn dɛm na we i de blɔd pasmak frɔm ivin smɔl injuri, di bɔdi de tɔn blu, ɛn di jɔyn dɛn we de swel.
- Bɔrku ed pen ɔr jɔyn pen wae nɔr kin bia na imejensi wae nid fɔ go to dɔktɔ kwik kwik wan (ETU).
- Pan ɔl we no kɔmplit mɛrɛsin nɔ de fɔ dis, di tritmɛnt dɛn we dɛn de yuz tide kin kɔntrol di blɔd ɛn mek yu liv nɔmal layf.
- Ɔltɛm tɔk to yu dɔktɔ bɔt yu sik ɛn tritmɛnt.
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