We yu gɛt smɔl kɔt ɔ skrap, smɔl blɔd go flɔ ɛn stɔp fɔ insɛf, nɔto so? Dis na bikɔs ɔf wan wɔndaful we aw wi bɔdi de wok. Bɔt fɔ sɔm pipul dɛn, dis nɔ kin apin. Ivin wit smɔl kɔt, dɛn blɔd kin tek lɔng tɛm fɔ stɔp, sɔntɛnde i nɔ kin stɔp atɔl. Dis na bikɔs dɛn blɔd nɔ de klot fayn. Tide, wi go tɔk bɔt wan pan dɛn kayn sik ya, we na Ɛmofilia B, ɛn di patikyula tritmɛnt fɔ am we de sev layf, we na Factor IX Complex Injection . Pan ɔl we dis kin tan lɛk tɔpik we nɔ izi fɔ tɔk bɔt, lɛ wi kip am simpul.
Fɔ tɔk am simpul wan, wetin na dis Factor IX Complex?
Imajin se wi blɔd na smɔl tim we de wok. We wund de sɔmsay ɛn blɔd bigin, dis tim we de wok kin kam togɛda kwik kwik wan fɔ lɔk di wund ɛn fɔm "dam" fɔ stɔp di blɔd. Ɛni wokman kin ɛp fɔ du dis wok wan we ɔ ɔda we. Wi kin kɔl dɛn wokman dɛn ya Klɔtin Fakta .
Naw, pan pɔsin we gɛt wan sik we dɛn kɔl Ɛmofilia B , di nɔmba nayn (IX) wokman na dis tim, di prɔtin we dɛn kɔl Factor IX , kin rili smɔl ɔ i nɔ de. So if i nɔ de, dɛn nɔ go ebul fɔ mek da "dam" de fayn. Na dat mek i nɔ kin izi fɔ mek dɛn stɔp fɔ blɔd.
Dis na di say we di Factor IX Complex vaysin de kam in. Dis vaysin de gi di Factor IX we nɔ de ɔ we nɔ de kɔmɔt na do na di bɔdi. Na injɛkshɔn we dɛn kin gi insay di bɛlɛ. we i go insay di bכdi, di bכdi we de kכlכt de bigin fכ apin nכmal wan bak. Dis min se i kin mek blɔd nɔ kɔmɔt ɛn kɔntrol di blɔd we dɔn ɔlrɛdi de apin.
Dis mɛrɛsin kin kam ɔnda difrɛn brand nem dɛn na Sri Lanka. Fɔ ɛgzampul, yu kin se nem dɛn lɛk Bebulin ɛn Profilnine. I nɔ mata us nem fɔ di mɛrɛsin we dɛn gi yu, i gɛt dis sem tin we dɛn kɔl Factor IX.
Tin dɛm wae yu fɔ tɛl yu dɔktɔ bifo yu tek dis mɛrɛsin:
Dis na pat we rili impɔtant. I impɔtant fɔ tɛl yu dɔktɔ bɔt yu kɔmplit wɛlbɔdi histri bifo yu bigin dis tritmɛnt, bikɔs sɔm tin dɛn kin nid spɛshal kia we yu de yuz dis mɛrɛsin.
| Situeshɔn we yu nid fɔ ripɔt | Wetin mek yu nid fɔ tɛl di dɔktɔ dat? |
|---|---|
| If yu dɔn gɛt blɔd klot bifo. | Bikɔs dis mɛrɛsin de mek blɔd klot mɔ ɛn mɔ, i kin mek di risk fɔ pɔsin we dɔn ɔlrɛdi de pan denja. Yu dɔktɔ kin pe spɛshal atɛnshɔn to di doz ɛn tritmɛnt we dɛn no bɔt dis. |
| If dɛn jɔs dɔn du ɔpreshɔn pan yu ɔ yu de plan fɔ du ɔpreshɔn tumara bambay. | Ɔpreshɔn na tɛm we di risk fɔ mek blɔd kɔmɔt de bɔku. Risk de bak fɔ mek blɔd klɔt. So, i impɔtant fɔ mek di dɔktɔ no bɔt dis. |
| If yu gɛt at sik. | Pipul wae gɛt hat sik kin gɛt bɔrku bɔrku bɔrku blɔd, so spɛshal kia we dɛn de yuz dis mɛrɛsin. |
| If yu gɛt liva sik. | Di liva na di wan we de mek bɔku pan di tin dɛn we de mek blɔd klɔt na wi bɔdi. Dis fɔ tink bak we yu de gi dis mɛrɛsin to pɔsin we gɛt prɔblɛm wit in liva. |
| If yu gɛt alɛji to Factor IX, ɔda mɛrɛsin, it, ɔ day. | Dis rili impɔtant. Tɛl yu dɔktɔ bɔt ɛni alɛji we yu gɛt. Dis kin ɛp fɔ mek yu nɔ gɛt siriɔs alɛji. |
| If yu gɛt bɛlɛ ɔ yu de tray fɔ gɛt bɛlɛ. | Dɛn fɔ tek tɛm yuz ɛni mɛrɛsin we dɛn gɛt bɛlɛ. Yu nid fɔ tink bɔt di tin dɛn we kin apin to di pikin. So, yu fɔ tɛl yu dɔktɔ bɔt dis. |
| If yu na mama we de gi pikin in bɛlɛ. | i impɔtant fɔ no if di mɛrɛsin de pas to di pikin tru in mama in milk. So mek shɔ se yu tɛl yu dɔktɔ bɔt dis bak. |
Aw dɛn kin yuz dis vaysin?
Dɛn kin gi dis mɛrɛsinDɛn kin gi am as infushɔn we dɛn kin put insay di bɛlɛ. Na di mɛdikal wokman dɛm na ɔspitul ɔ klinik kin gi yu dis. Bɔt sɔm tɛm, mɔ fɔ pipul dɛn we de tek lɔng tɛm tritmɛnt, dɛn kin tren yu fɔ tek dis injɛkshɔn na os.
If yu fɔ yuz dis mɛrɛsin na os, yu go gɛt ful trenin. Dɛn go tich yu aw fɔ miks di bɔtul we gɛt paoda ɛn di bɔtul we gɛt stɛriyl wata, aw fɔ put di nidul insay di vein, ɛn ivin aw fɔ injɛkt di mɛrɛsin kwik kwik wan na yu bɔdi. Fɔ fala dɛn instrɔkshɔn ya gud gud wan.
Wetin yu kin du wit nidul ɛn sirinj we yu dɔn yuz?
Dis rili impɔtant. Nɔ ɛva trowe nidul ɛn sirinj dɛn we yu dɔn yuz na di dɔti . If yu du dat, i kin mek di pɔsin we de gɛda dɔti ɔ ɔda pipul dɛn wund bad bad wan, ivin sik dɛn we pɔsin kin gɛt we i gɛt blɔd.
Wan spɛshal shap kɔntena de we yu kin yuz fɔ put dɛn tin ya insay If dɛn de trit yu na os, aks yu wɛlbɔdi tim bɔt aw fɔ gɛt wan. Dɛn go gi yu instrɔkshɔn bak bɔt aw fɔ trowe am sef wan we i ful-ɔp.
Yu tink se dɛn kin gi pikin dɛn dis mɛrɛsin?
Yɛs, dɛn kin gi dis tritmɛnt to pikin dɛn bak if nid de. Bɔt dɛn kin du am wit big kia ɛn akɔdin to spɛshal dɔktɔ dɛn advays.
Wetin a go du if a tek bɔku mɛrɛsin?
If yu tink se yu dɔn it mɔ mɛrɛsin pas aw yu tink, go na di ɔspitul Imejɛnsi Dipatmɛnt (ETU) we de nia yu wantɛm wantɛm. Ɔ kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Kɔlɔmbɔ Nashɔnal Ospital fɔ advays.
Mɛmba se na fɔ yu nɔmɔ dɛn gi dis mɛrɛsin. Nɔ ɛva sheb am wit ɛni ɔda pɔsin.
Wetin fɔ du if yu mis wan doz fɔ mɛrɛsin?
I rili impɔtant fɔ tek yu mɛrɛsin di rayt tɛm, mɔ if yu de tek am fɔ mek yu nɔ gɛt blɔd (prophylaxis). If yu mis wan doz, nɔ panik ɛn kɔntak yu dɔktɔ ɔ yu mɛdikal tim wantɛm wantɛm fɔ advays bɔt wetin fɔ du nɛks. Dɛn go tɛl yu if yu fɔ tek di doz we yu mis ɔ tek di nɛks doz na di tɛm we dɛn dɔn sɛtul.
Us ɔda tin dɛn kin miks wit dis mɛrɛsin?
Sɔm mɛrɛsin kin intarakt wit dis Factor IX Complex vaysin. Fɔ ɛgzampul,
- Aminokaproik asid we dɛn kɔl
- Tranexamic asid we dɛn kɔl
Dɛn mɛrɛsin ya tan lɛk ɔda mɛrɛsin dɛn we de ɛp fɔ mek blɔd klɔt. If yu yuz dɛn tin ya togɛda, dat kin mek yu blɔd klɔt mɔ.
Bɔt dis list nɔ kɔmplit. So, ɛni ɔda mɛrɛsin we yu tekTɛl yu dɔktɔ bɔt ɛni mɛrɛsin (we dɔktɔ dɛn gi yu fɔ ɔda kɔndishɔn), vaytamɛn , nyutrishɔn sɔpɔtmɛnt , Ayurveda ɔ ɛbul mɛrɛsin we yu de tek. Tɛl yu dɔktɔ bak if yu de smok ɔ drink rɔm. Dɔn yu dɔktɔ kin mek di tritmɛnt plan we sef fɔ yu.
Tin dɛn we yu fɔ tek tɛm wit mɔ we yu de tek di mɛrɛsin
- Yu fɔ chɛk yu dɔktɔ ɔltɛm: Kɔntakt yu dɔktɔ ɔltɛm fɔ si aw yu tritmɛnt de wok fayn. Go na di klinik dɛn di de dɛn we dɛn dɔn sɛtul. Tɛl yu dɔktɔ if yu sik nɔr de bɛtɛ ɔr if dɛn de wɔs.
- Blɔd tɛst: We yu de du tritmɛnt, yu kin nid fɔ du blɔd tɛst fɔ chɛk yu Factor IX lɛvɛl ɛn ɔda tin dɛn na yu blɔd.
- Di say we di mɛrɛsin kɔmɔt: Dis na kwɛstyɔn we bɔku pipul dɛn kin gɛt. Sɔm tin dɛn we dɛn kin mek na Factor IX na blɔd plasma we pipul dɛn kin gi . Bikɔs ɔf dis, sɔm kin wɔri bɔt vayrɔs lɛk epataytis ɔ HIV we kin pas tru da blɔd de. Bɔt wit di tɛknɔlɔji we de naw, dɛn kin mek dɛn prɔdak ya bay we dɛn de yuz rili strikt we fɔ klin fɔ kil ɛni vayrɔs ɔ baktri we kin de. So, di risk fɔ gɛt di sik rili, rili smɔl . If yu gɛt ɛni ɔda kwɛstyɔn bɔt dis, nɔ shek fɔ tɔk to yu dɔktɔ.
- Tek tɛm wit mɛrɛsin dɛn we de mek yu fil pen: Dis na sɔntin we yu fɔ rili mɛmba. Nɔ yuz mɛrɛsin dɛn we de mek pɔsin fil pen lɛk Aspirin, Ibuprofen, ɛn Naproxen . Dɛn mɛrɛsin ya kin mek pɔsin gɛt blɔd. If yu gɛt fiva ɔ yu bɔdi de at, aks yu dɔktɔ bɔt aw fɔ yuz Paracetamol .
- Mɛdikal ID kad ɔ breslɛt: I fayn fɔ kɛr kad ɔ breslɛt we gɛt infɔmeshɔn bɔt yu sik (dat yu gɛt Ɛmofilia B), di mɛrɛsin dɛn we yu de tek, ɛn di doz dɛm. Dis go rili ɛp di wan dɛn we de trit yu if ɛnitin apin, lɛk aksidɛnt.
Wetin na di bad tin dɛn we kin apin to pɔsin?
Lɛk ɛni mɛrɛsin, dis wan kin mek sɔm pipul dɛn gɛt sayd ɛfɛkt. Bɔt nɔto ɔlman kin gɛt dɛn. Lɛ wi tek wan luk pan wetin na dɛn sayd ɛfɛkt ya ɛn wetin fɔ du if dɛn apin.
| Tayp fɔ di sayd ɛfɛkt | Sayn dɛn |
|---|---|
| If yu gɛt dɛn sik ya, tɛl yu dɔktɔ ɔ ɔspitul wantɛm wantɛm. | |
| Siriɔs alɛji riakshɔn dɛn | Skin de rɔsh, it, rɛd, swel na yu fes, lip, yu tɔŋ ɔ yu trot, i nɔ izi fɔ blo. |
| Blɔd we De Klɔt | Leg pen, swel ɔ wam, at fɔ blo, chɛst pen. |
| Bɔku tɛm, dɛn tin ya nɔ kin siriɔs, bɔt if dɛn kɔntinyu fɔ de, tɛl yu dɔktɔ. | |
| Taya | Fɔ fil se yu taya pasmak ɛn yu taya. |
| Fɔ mek yu flash | Di fes ɛn nɛk eria kin rɛd ɛn fil wam. |
| Ed de at | Kɔmɔn ed pen. |
| Vɔmit | Fɔ fil lɛk se yu de vɔmit. |
| Pen na di say we dɛn injɛkshɔn | Pen, rɛd, ɔ swel smɔl na di say we dɛn injekt am. |
Dis list gɛt sɔm pan di sayd ɛfɛkt dɛn nɔmɔ we pɔsin kin gɛt. If yu gɛt ɛnitin we nɔ kɔmɔn, go to yu dɔktɔ wantɛm wantɛm.
Aw yu kin kip ɛn trowe di mɛrɛsin?
- Aw fɔ kip dis mɛrɛsin: Yu mɛdikal tim go gi yu klia instrɔkshɔn bɔt aw fɔ kip dis mɛrɛsin. Sɔm fɔ de na frij, ɛn ɔda wan dɛn fɔ de na rum tɛmpracha. Fɔ fala dɛn instrɔkshɔn dɛn de jɔs. Kip am usay pikin ɛn animal dɛn we yu lɛk nɔ go ebul fɔ rich.
- Aw fɔ trowe am: Dɛn fɔ trowe di mɛrɛsin dɛn we dɔn pas ɔ we dɛn nɔ nid igen. Nɔ put dɛn na di dɔti we yu kin trowe ɔltɛm. Aks yu dɔktɔ ɔ di mɛdikal tim bɔt aw fɔ trowe dɛn fayn fayn wan.
Mɛsej we dɛn kin kɛr go na os
- Factor IX Complex vaccine na tritmɛnt we de sev layf we de mek pipul dɛn we gɛt ɛmofilia B nɔ blɔd ɛn kɔntrol am bay we dɛn de gi di deficient blood clotting factor (Factor IX) na do.
- Bifo yu bigin fɔ trit yu, mek shɔ se yu tɛl yu dɔktɔ bɔt yu kɔmplit wɛlbɔdi istri, ɔda mɛrɛsin dɛn we yu de tek, ɛn ɛni alɛji we yu gɛt.
- If yu de gɛt tritmɛnt na os, trowe tin dɛn lɛk nidul ɛn sirinj fayn fayn wan (insay Sharps Kɔntinɛnt). Nɔ ɛva put dɛn na di dɔti.
- If yu gɛt ɛni bad bad sayd ɛfɛkt lɛk fɔ mek yu nɔ ebul fɔ blo fayn, yu fes de swel, yu chɛst de pen, ɔ yu leg dɛn de swel, go to dɔktɔ wantɛm wantɛm.
- Nɔ tek mɛrɛsin fɔ mek yu fil pen lɛk aspirin ɔ ibuprofen we yu nɔ go to yu dɔktɔ. Paracetamol nɔ bad fɔ pen ɔ fiva.
- If yu gɛt ɛni kwɛstyɔn bɔt yu tritmɛnt ɔ mɛrɛsin, nɔ fred fɔ aks yu dɔktɔ. Di mɔ yu no bɔt yu sik, na di mɔ i go izi fɔ yu fɔ kɔntrol am.
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