I nɔmal fɔ mek yu smɔl pikin gɛt smɔl smɔl kɔt ɛn skrap we i de ple. Bɔt, yu tink se i kin tek lɔng tɛm pas aw i kin tek fɔ mek smɔl kɔt ɔ blɔd kɔmɔt na in nos stɔp? Yu bɔdi kin brus izi wan? As mama ɔ papa, wi kin ɔndastand se yu kin wɔri ɛn wɔri bɔt sɔntin lɛk dis. So tide, lɛ wi tɔk bɔt wan sik we kin mek dis sik, bɔt if dɛn manej am fayn , i kin alaw yu pikin fɔ liv nɔmal layf. Dat na ɛmofilia B.
Fɔ tɔk am simpul wan, wetin na ɛmofilia B?
Okay, mek wi put am dis we. We wi gɛt wund sɔmsay na wi bɔdi, di blɔd kin stɔp fɔ sɔm tɛm bikɔs ɔf spɛshal prɔtin dɛn we de na wi blɔd. Wi kin kɔl dɛn tin ya ‘ clotting factors’ ɔ clotting factors . Tink bɔt dɛn wan ya lɛk wan tim we de wok ɛn we kin kam fɔ mek wan wund kwik kwik wan. Dɛn wokman ya de wok togɛda fɔ mek wan ‘klɔt’ we de stɔp di blɔd.
13 kayn tin dɛn de we kin mek wi blɔd klɔt. Pikin we gɛt ɛmofilia B gɛt siriɔs dɛfisiɛns fɔ factor IX, we na di nɔmba nayn pan dɛn tin ya we de mek di bɔdi klɔt. If dis impɔtant tin we de mek pɔsin blɔd nɔ de kɔmɔt fayn, di klot we de stɔp fɔ blɔd we injuri de nɔ de fɔm fayn fayn wan. Na dat mek di blɔd kin las fɔ lɔng tɛm pas aw i kin bi.
Dɛn kin no dis sik we dɛn smɔl. Na smɔl pipul dɛn nɔmɔ we gɛt ɛmofilia gɛt tayp B. I kin apin bak pan bɔy pikin dɛn pas gyal pikin dɛn.
Wetin na di rizin we mek dis kayn tin de apin?
Bɔku tɛm, di pikin kin gɛt dis frɔm di mama. Di mama kin bi pɔsin we gɛt wan jin we nɔ fayn we kin mek pɔsin gɛt dis sik. כltu, sכmtεm, ivin if nכbodi na di famili nכ gεt dis kכndyushכn, di pikin kin gεt dis sik bikoz fכ wan random chenj (jin mכtεshכn) na wan jin we di mama de insay di bεlε.
Aw wi kin no dɛn sayn ya?
Di tu men sayn dɛm na fɔ blɔd fɔ lɔng tɛm pas aw i fɔ bi ɛn fɔ brus izi wan . Wach fɔ dɛn sayn ya na yu pikin.
| Di sayn we de sho se di sik de | Mɔ infɔmeshɔn |
|---|---|
| Blɔd we de kɔmɔt na yu nos ɔltɛm | If yu kin gɛt blɔd na yu nos ɔltɛm fɔ no patikyula rizin. |
| Blɔd we de kɔmɔt pasmak frɔm smɔl wund | If ivin smɔl skrach de mek bɔku blɔd kɔmɔt. |
| Blɔd we de kɔmɔt insay di mɔt | If tut kɔntinyu fɔ blɔd afta dɛn dɔn bit am ɔ pul am. |
| Di blɔd we de kɔmɔt bak | If wund bigin fɔ blɔd bak afta i dɔn stɔp fɔ blɔd. |
| Blɔd we de na di urine ɔ di stɔl | Dis na tin bak we yu fɔ no bɔt. |
| Big big brus dɛn | If yu gɛt big big blu brus na yu bɔdi izi wan. |
Sɔntɛnde dis blɔd nɔ kin si na di bɔdi. I kin apin bak insay wan mɔsul ɔ jɔyn lɛk ni ɔ ɛlb. If dis apin, di say go swel, i go fil pen, ɛn i go fil wam we yu tɔch am .
If yu nak yu ed, yu fɔ rili tek tɛm!
Wit dis kondishon, ivin smol blok na di ed kin bi very denja. I kin mek blɔd kɔmɔt insay di bren. If yu pikin nak in ed ɛnisay, luk fɔ ɛni wan pan dɛn sayn ya. If dɛn du dat, kɛr dɛn go na di ɔspitul we de nia yu in Imejɛnsi Dipatmɛnt (ETU) wantɛm wantɛm.
| Imejɛnsi wɔnin sayn dɛm fɔ se blɔd de kɔmɔt na yu bren | |
|---|---|
| – Siriv ed pen | – Fɔ vɔmit |
| – Nɛk pen ɛn stiffness | – Fɔ slip pasmak |
| – Wantɛm we yu nɔ gɛt kɔnshɛns | – I nɔ izi fɔ waka |
Aw dɔktɔ kin no kɔrɛkt wan bɔt dis sik?
i kin tranga sכmtεm fכ si dis insay di pikin in fכs 6 mכnt biכs di pikin dεm nכ de fכl כ inju so bכku insay da tεm de. Bɔt yu kin bigin fɔ notis dɛn prɔblɛm ya we yu pikin bigin fɔ kray ɛn waka.
We yu kɛr yu pikin go to dɔktɔ, i go aks yu tin dɛn lɛk:
- "Aw dɛn brus ɛn injuri ya apin?"
- "Aw lɔng i tek fɔ mek di blɔd stɔp?"
- "Di pikin de tek eni mɛrɛsin?"
- "Ɛni ɔda wɛlbɔdi prɔblɛm de?"
- "Ɛnibɔdi na di famili gɛt prɔblɛm lɛk dis wit blɔd ɔ klot?"
Dɔn, fɔ mek dɛn no se i gɛt di sik, di dɔktɔ go tɛl di pikin fɔ du bɔku blɔd tɛst. Dɛn tin ya kin luk mɔ pan aw lɔng i kin tek fɔ mek di blɔd klɔt ɛn us tin dɛn we kin mek di blɔd nɔ klɔt.
| Blɔd tɛst | Aw i tan lɛk? |
|---|---|
| Kɔmplit Blɔd Kɔnt (CBC) . | I de gi impɔtant infɔmeshɔn bɔt di kayn ɛn di bɔku bɔku sɛl dɛn we de na di blɔd. |
| PT ɛn aPTT tɛst (Prothrombin Tɛm & Aktivɛt Patɛl Tromboplastin Tɛm) . | Dɛn tu tin ya kin mɛzhɔ di tɛm we i kin tek fɔ mek blɔd klɔt. |
| Factor VIII ɛn Factor IX tɛst dɛn | di lεvεl dεm fכ dεn kכlכt fכktכ dεm ya na di bכdi dεn kin mכsu di prεsis. |
Wetin na di tritmɛnt dɛn?
Nɔr mɛrɛsin nɔr de fɔ dis sik, bɔt if yu de trit yu pikin fayn fayn wan, i kin liv aktif, gladi layf.
Di men tritmɛnt na Riplesmɛnt Tɛrapi . Fɔ tɔk am simpul wan, dɛn kin gi di tin we di pikin nɔ gɛt, dat na di tin we di bɔdi nɔ ebul fɔ mek, we dɛn kɔl Factor IX , as injɛkshɔn insay wan vein. di Factor IX we dεn gi kin kכmכt frכm mכtalman blכd plasma, כ i kin bi rεkombinεnt.
- If di sik bad: Fɔ mek di pikin nɔ blɔd, i go nid fɔ gɛt dis tritmɛnt ɔltɛm.
- If di sik nɔr tu bad: Wae blɔd bigin fɔ kɔmɔt, dɛn kin jɔs nid tritmɛnt fɔ stɔp am.
Dɛn kin gi dis tritmɛnt na klinik. Sɔntɛnde, nɔs kin kam na yu os, ɔ dɛn kin tren mama ɛn papa fɔ gi am to dɛn pikin na os.
Tin dɛn we wi nid fɔ tek tɛm wit we wi de kia fɔ pikin
- Fɔs ɛp: As yu gɛt smɔl kɔt ɔ skrap so, klin di say, ol am tranga wan, ɛn put bandej pan am. Bɔt fɔ pɔsin we gɛt siriɔs injury, yu fɔ rili go to dɔktɔ .
- Ɛksesaiz ɛn wet: Ɛksesaiz we de mek di mɔsul dɛn strɔng impɔtant bikɔs di mɔsul dɛn we strɔng nɔ de mek di blɔd kɔmɔt bikɔs i wund. Dɔn bak, fɔ mek yu gɛt wɛlbɔdi i impɔtant bikɔs if yu gɛt bɔku bɔku wet, dat kin mek yu gɛt mɔ prɛshɔn pan yu jɔyn dɛn ɛn i kin mek yu gɛt mɔ prɔblɛm wit blɔd.
- Fɔ tɛl ɔda dɔktɔ dɛn: Tɛl ɔl di wan dɛn we de kia fɔ di pikin, ivin di pikin in dɛntist, bɔt di sik we yu pikin gɛt, bikɔs dɛn kin nid fɔ gi dɛn spɛshal mɛrɛsin fɔ ɛp fɔ mek blɔd klɔt bifo yu du sɔntin lɛk fɔ pul in tut.
- Nɔ gi mɛrɛsin if yu nɔ gɛt dɔktɔ advays: Sɔm mɛrɛsin dɛn we de mek yu fil pen lɛk ibuprofen kin mek yu blɔd bɔku . So, nɔ gi yu pikin ɛni mɛrɛsin we yu nɔ de bay we yu nɔ go to yu dɔktɔ fɔs.
- Sef: Du yu bɛst fɔ protɛkt yu pikin frɔm aksidɛnt. Wear knee pad, elbow pad, ɛn ɛlmɛt we yu de ple. Tek tɛm wit shap ed dɛn na tebul ɛn chia dɛn na os.
Mɛsej we dɛn kin kɛr go na os
- Ɛmofilia B na wan jenɛtik kɔndishɔn we kin kam bikɔs i nɔ gɛt Factor IX , we na wan tin we kin mek di blɔd klɔt.
- If yu pikin gɛt sɔm sayn dɛn lɛk fɔ blɔd fɔ lɔng tɛm pas aw i fɔ gɛt ɔ fɔ brus izi wan, go to dɔktɔ wantɛm wantɛm.
- If yu pikin nak dɛn ed, na imejensi . If dɛn gɛt sɔm sayn dɛn lɛk ed we de at ɛn vɔmit, kɛr dɛn go na di ɔspitul in Imejɛnsi Tritmɛnt Yunit (ETU) wantɛm wantɛm.
- Ɔltɛm, go to yu dɔktɔ bifo yu gi yu tritmɛnt ɛn ɛni mɛrɛsin we de mek yu fil pen.
- If yu gɛt di rayt tritmɛnt, di rayt we fɔ manej yu pikin, ɛn fala di tin dɛn we yu fɔ du fɔ mek yu pikin gɛt sef, i go ebul fɔ liv ful aktif ɛn nɔmal layf. Nɔ fred, bɔt na fɔ no.
Ɛmofilia B, blɔd we de klɔt, factor ix, pikin dɛn sik, jɛnɛtik sik, blɔd we de kɔmɔt pasmak
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