Yu kin fil taya ɛn taya ɔltɛm? Sɔntɛm yu skin dɔn pale smɔl? Ɔ ɛnibɔdi na yu famili gɛt blɔd sik? Dɔn wetin a go tɛl una rili impɔtant to una. Tide wi go tɔk bɔt wan blɔd sik we dɛn kɔl Ɛmoglobinopathy, we gɛt sɔm kayn nem we kɔmplikt, bɔt dɛn kin si am pan bɔku pipul dɛn. Nɔ wɔri, wi go tɔk bɔt dis rili simpul wan.
Wetin na Ɛmoglobinopathy? Mek wi no di rayt tin!
Fɔ tɔk am simpul wan, ɛmoglobinopathie na wan grup fɔ sik dɛn we wi kin gɛt frɔm wi mama ɛn papa we kin afɛkt di prɔtin we de na wi blɔd we dɛn kɔl ɛmoglobin. Naw yu go mɔs de wɔnda wetin na dis ɛmoglobin, nɔto so?
Tink bɔt dis we: ɛmoglobin tan lɛk smɔl hiro insay wi rɛd blɔd sɛl dɛn. Na di wan we de pik ɔksijɛn frɔm wi lɔng dɛn we wi de blo ɛn sheb am ɔlsay na wi bɔdi. I de wok lɛk ɔksijɛn taksi. So if dis ɛmoglobin nɔ de prodyuz fayn, ɔ if i nɔ prodyuz inof, wi bɔdi nɔ de gɛt inof ɔksijɛn. Na da tɛm de di prɔblɛm dɛn kin bigin.
Dis sik na tin we wi kin gɛt frɔm wi mama ɛn papa, we min se na bikɔs di jin dɛn we wi kin gɛt frɔm wi mama ɛn papa kin chenj. Bɔku bɔku pipul dɛn ɔlsay na di wɔl de sɔfa wit dis sik. Infakt, na di kayn sik we pɔsin kin gɛt we i gɛt blɔd. Risach pipul dɛn dɔn no se i pas 600 kayn ɛmoglobinopathies!
We wi bɔdi prodyuz abnɔmal ɛmoglobin, ɔ nɔr de du am inof, sɔm sayn dɛn lɛk bɔdi we de at, taya, ɛn pwɛl difrɛn pat dɛn kin apin. Na dat mek i rili impɔtant fɔ no am kwik kwik wan. Na dat mek dɔktɔ dɛn kin tɛst pikin dɛn fɔ si if dɛn gɛt ɛmoglobinopathy jɔs afta dɛn bɔn dɛn.
Di impɔtant tin na dat, Ɛmoglobinopathy nɔto sik we pɔsin kin mɛn ɔltogɛda. Bɔt if wi gɛt di rayt tritmɛnt, wi kin kɔntrol di sik dɛn ɛn mek wi nɔ gɛt prɔblɛm dɛn.
Us kayn ɛmoglobinopathies de?
As wi bin dɔn tɔk, bɔku bɔku kayn dis de. Bɔku tɛm, dɛn kin gi dɛn kayn nem dɛn ya bay we dɛn de yuz Inglish lɛta dɛn. Di lɛta dɛn de tɔk bɔt di difrɛn we dɛn we di ɛmoglobin prɔtin gɛt ɛn di ɔda we aw di wan dɛn we de stɔdi bɔt dis bin fɛn dɛn. Dis kin ɛp dɔktɔ dɛn fɔ ɔndastand di rayt we aw di jɛnɛtiks kin chenj.
Na sɔm pan di kayn ɛmoglobinopathy we dɛn kin gɛt:
- Ɛmoglobin C sik: Dis na di say we di nɔmal ɛmoglobin de tek wan kayn we dɛn kɔl ɛmoglobin C.
- Ɛmoglobin E sik: Na ya, di nɔmal ɛmoglobin de tek di ples fɔ ɛmoglobin E.
- Ɛmoglobin D sik: Na ya, di nɔmal ɛmoglobin de tek di ples fɔ ɛmoglobin D.
- Di sik we dɛn kɔl ɛmoglobin SC:dis kכndyushכn kin apin if yu gεt wan sikεl sεl jin εn wan εmoglobin C jin.
- εmoglobin SD sik: Na ya, dεn kin gεt wan sikεl sεl jin εn wan εmoglobin D jin.
- εmoglobin SE sik: Na ya, dεn kin gεt wan sikεl sεl jin εn wan εmoglobin E jin.
- Siklɔs sik: Insay dis kɔndishɔn, yu rɛd blɔd sɛl dɛn kin tan lɛk sik. Dis kin mek dɛn nɔ ebul fɔ muv izi wan tru di blɔd vesel dɛn ɛn i kin mek dɛn blok.
- Talasemia: We yu gɛt dis sik, yu bɔdi nɔ de mek inof ɛmoglobin.
Dis kin tan lɛk se i kɔmplikt smɔl, bɔt dɔktɔ kin ɛksplen am to yu mɔ.
Wetin na di sayn dɛm fɔ dis? Si if yu get dis tu...
Di sayn dɛm fɔ ɛmoglobinopathy kin difrɛn frɔm wan pɔrsin to ɔda pɔrsin, bɔt sɔm kɔmɔn sayn dɛm de:
- Kol an ɛn fut
- Dak urine (we de dak) .
- Fɔ taya ɔltɛm
- Delay divεlכpmεnt na pikin dεm
- Di skin ɛn yay we de yɔlɔ (Jaundice) .
- Pale skin
- I nɔ izi fɔ blo, i de swɛt
- Slip pas aw i kin slip
- Di limb dɛn we de swel
Bebi dεm we gεt siriכs hεmoglobinopathy kin sho di sayn dεm we dεn bכn dεm. Sɔntɛnde, di sayn dɛm kin apia we i smɔl. pan big pipul dεm, dεn simptom dεm ya kin bi mכr siriכs pan di tεm dεm we di sik de bכku (lεk sikl sεl krεse).
Wetin mek dis ɛmoglobinopathy kin apin?
Di men rizin fɔ dis na bikɔs wan jin we de chenj we kin afɛkt yu ɛmoglobin. Yu kin gɛt dis jɛnɛtik chenj frɔm yu mama, yu papa, ɔ ɔl tu. Dis min se dis nɔto sɔntin we wi go ebul fɔ kɔntrol, na sɔntin we kɔmɔt frɔm ɛritaj.
Udat dɛn kin gɛt dis sik mɔ? (Di tin dɛn we kin mek pɔsin gɛt prɔblɛm)
Sɔm pipul dɛn kin gɛt dis ɛmoglobinopathy. Lɛ wi tek wan luk pan udat dɛn bi:
- If yu gret gret granpa dɛn kɔmɔt na Afrika, Mɛditarenian, Sawt Is Eshia, ɔ Wɛst Eshia. (Yu kin si dɛn kɔndishɔn ya bak na Sri Lanka)
- If yu mama, papa, ɔ yu brɔda ɛn sista gɛt ɛmoglobinopathy.
- If yu de na say usay dɛn nɔ kin du nyu bɔbɔ fɔ chɛk if i gɛt ɛmoglobinopathy ɔltɛm.
If yu gɛt ɛmoglobinopathy, chans de fɔ mek yu pikin gɛt di sik bak. So, i rili impɔtant fɔ go to dɔktɔ bifo yu bigin famili.
Us prɔblɛm dɛn dis kin mek?
If dɛn nɔ kɔntrol ɛmoglobinopathy fayn, difrɛn prɔblɛm dɛn kin apin. Sɔm pan dɛn na:
- Anemia: Sɔm kayn ɛmoglobinopathy kin mek yu nɔ gɛt bɛtɛ blɔd, ɛn dis kin mek di rɛd blɔd sɛl dɛn nɔ bɔku. Dis kin mek yu taya mɔ ɛn mɔ ɛn wikɛd.
- Infekshɔn bɔku tɛm: Ɛmoglobinopathy kin mek yu imyun sistɛm nɔ fayn , we kin mek yu sik ɛn gɛt infɛkshɔn mɔ ɛn mɔ.
- Ɔgan dɛn we de pwɛl: Ɛmoglobinopathy kin mek di ɔksijɛn lɛvɛl na di blɔd go dɔŋ. We dɛn nɔ de gi blɔd we gɛt ɔksijɛn fayn fayn wan fɔ sɔm tɛm, wi tisu ɛn ɔgan dɛn kin pwɛl.
- Di pen: Insay sɔm kayn ɛmoglobinopathies, lɛk siklɔs sik, blɔd kin klɔt insay di blɔd vesel ɛn blok dɛn. Dis kin mek yu fil pen bad bad wan ɛn blɔd nɔ kin flɔ.
Aw yu kin no dis sik kɔrɛkt wan? (Diagnosis) .
Dɔktɔ dɛn kin du bɔku tɛst dɛn fɔ no if yu gɛt ɛmoglobinopathy.
- Kɔmplit blɔd kɔnt (CBC): Dis na di fɔs blɔd tɛst we dɛn kin du. I kin tɛl yu bɔt di kayn sɛl dɛn we de na yu blɔd, dat na ɔmɔs pan ɛni kayn sɛl yu gɛt.
- Jɛnɛtik tɛst: Dis tɛst kin no ustɛm jɛnɛtik chenj dɛn de insay.
- εmoglobin εlektrofכresis: Dis tεst de separet di εmoglobin mכlikul dεm frכm wan sεmpl na yu blכd εn luk fכ abnכmal tin dεm.
- Stɔdi fɔ ayɛn: Dɛn kin du dis tɛst fɔ no if yu gɛt ayrɔn-deficiency anemia.
- Fɔ chɛk di pikin dɛn we dɛn jɔs bɔn: Insay bɔku kɔntri dɛn lɛk Kanada ɛn Amɛrika, dɛn kin chɛk di pikin dɛn we dɛn jɔs bɔn fɔ si if dɛn gɛt ɛmoglobinopathy. Sɔm ɔspitul dɛn na Sri Lanka gɛt dis ples bak.
- tεst bifo uman bכn: dεn kin yuz dis tεst fכ no if di pikin gεt εmoglobinopathy we i bεlε.
Wetin na di tritmɛnt dɛn?
Bɔku tritmɛnt dɛn de fɔ ɛmoglobinopathy, bɔt dɛn tritmɛnt ya kin difrɛn difrɛn wan bay di kayn sik ɛn aw i siriɔs.
- Blɔd transfyushɔn: Sɔm tin dɛn lɛk talasemia ɛn sikɛl sɛl sik kin afɛkt di bɔku bɔku ɛmoglobin we de na di blɔd. I kin nid fɔ mek dɛn transfyushɔn blɔd fɔ mek di ɛmoglobin kɔntinyu fɔ de nɔmal.
- Fɔlik asid tablɛt: Dɛn tin ya kin ɛp fɔ mek rɛd blɔd sɛl dɛn bɔku.
- Jin tɛrapi: .Dis na nyu tritmɛnt. Sayɛnsman dɛn kin tek di sɛl dɛn we di sik dɔn afɛkt na yu bɔdi, dɛn kin yuz spɛshal we dɛn fɔ mek dɛn, dɔn dɛn kin put dɛn bak insay yu bɔdi. I tan lɛk se yu de rayt bak di instrɔkshɔn dɛn we de na yu jin dɛn.
- Iron chelation therapy: If yu gɛt tumɔs ayɔn na yu bɔdi, dis tritmɛnt kin pul di ayɔn we pasmak. Dɛn kin gi dis mɛrɛsin bay mɔt ɔ as injɛkshɔn.
- Ɔksijɛn tritmɛnt: Yu dɔktɔ kin tɛl yu fɔ tek ɔksijɛn wit ɔda tritmɛnt dɛn. Di gol fɔ dis na fɔ mek di ɔksijɛn we de na yu blɔd go ɔp ɛn fɔ mek yu nɔ fil pen.
- stεm sεl transplant: Dis min fכ riples di abnכmal rεd blכd sεl dεm wit hεlty rεd blכd sεl dεm. Bɔt dis nɔ kin rili kɔmɔn, bikɔs i nɔ kin izi fɔ fɛn pɔsin we fit fɔ gi mɔni. I kin kɛr di risk bak fɔ gɛt graft-versus-host disease (GvHD) .
Mɛmba se, i go dipen pan di kayn ɛmoglobinopathy we yu gɛt, yu nɔ go nid ɛni tritmɛnt atɔl. So i bɛtɛ fɔ tɔk to yu dɔktɔ ɛn aks wetin bɛtɛ fɔ yu.
Aw kwik a go fil fayn afta dɛn dɔn trit mi?
I rili dipen pan di kayn ɛmoglobinopathy we yu gɛt ɛn aw i siriɔs. Bɔrku pipul kin bigin fɔ fil fayn insay sɔm wik ɔr mɔnt afta dɛn bigin fɔ trit dɛn.
Ɛmoglobinopathy na wan sik we yu go gɛt fɔ yu layf, so yu go nid fɔ du mɛrɛsin tɛst ɔltɛm ɛn fɔ wach yu. Yu dɔktɔ go ɛp yu fɔ kɔntrol yu sik dɛn.
Wetin go apin tumara bambay fɔ di wan dɛn we gɛt dis sik?
If yu trit yu di rayt we, yu tumara bambay go fayn. Mɔr pas 90% pan di pipul dɛm wae gɛt ɛmoglobinopathy kin liv te dɛn big.
Bɔt if dɛn nɔ trit am, bɔku kayn ɛmoglobinopathies kin mek pɔsin day insay di fɔs ia dɛn we i de liv. So, fɔ no di sik kwik kwik wan ɛn fɔ trit am na di bɛst we fɔ mek yu nɔ gɛt siriɔs prɔblɛm.
Yu nɔ tink se dɛn go ebul fɔ stɔp dis?
Bɔt i sɔri fɔ no se, nɔto so. Bikɔs ɛmoglobinopathy na sɔntin we yu kin gɛt, no we nɔ de fɔ mek yu nɔ gɛt am. Bɔt wi kin ebul fɔ kɔntrol di sik dɛn wit di rayt tritmɛnt.
Aw a kin kia fɔ misɛf?
Fɔ liv wit ɛmoglobinopathy kin tranga, bɔt if yu tek kia ɔf yusɛf gud gud wan, yu kin ridyus di risk fɔ mek yu gɛt pen ɛn ɔda bad bad tin dɛn.
Na sɔm jenɛral advays dɛn we go ɛp yu:
- Drink bɔku wata. Tray fɔ drink at le 2-3 lita wata wan de.
- Bi aktiv, bɔt nɔ fɔ du am pasmak. Lisin to yu bɔdi. If yu fil se yu taya, rɛst.
- It tin dɛn we gɛt bɔku ayɔn, vaytamɛn, ɛn minral. Put grɛn, frut, vɛjitebul, mit, ɛn fish insay yu it.
- Manej yu strɛs. Yuz meditashɔn, yoga, ɔ ɔda we dɛn fɔ tink gud wan we yu lɛk.
- Wash yu an ɔltɛm. Dis kin ɛp fɔ protɛkt yu frɔm infɛkshɔn.
Ustɛm a fɔ go to dɔktɔ?
If yu gɛt sɔm sayn dɛn lɛk fɔ taya pasmak, fɔ gɛt prɔblɛm fɔ blo, ɔ fɔ mek yu skin gɛt blɛsin, mek shɔ se yu go to dɔktɔ ɛn tɛl dɛn bɔt am.
If dɛn dɔn ɔlrɛdi no se yu gɛt ɛmoglobinopathy, go to yu dɔktɔ wantɛm wantɛm if yu sik kam bak ɔ i wɔs. I kin ajɔst di we aw yu de trit yu.
Us kwɛstyɔn dɛn yu fɔ aks di dɔktɔ?
If yu ɔ yu pikin gɛt ɛmoglobinopathy, i go fayn fɔ aks yu dɔktɔ dɛn kwɛstyɔn ya:
- Us kayn ɛmoglobinopathy mi/mi pikin gɛt?
- Us kayn tritmɛnt yu kin advays?
- A go nid fɔ go to ɔda spɛshal pipul dɛn fɔ gɛt tritmɛnt?
- A nid fɔ chenj di we aw a de it ɔ ɛksesaiz?
- Wetin na di chans fɔ mek mi pikin dɛn gɛt dis sik?
- Yu gɛt ɛni ɔda tin bɔt dis? (e.g. buk, wɛbsayt)
Ustɛm yu nid fɔ go na di Imejɛnsi Tritmɛnt Yunit (ETU) ?
If yu gɛt ɛni wan pan dɛn sik ya, kɔl 911 (1990 na Sri Lanka) ɔ go na di imejensi rum we de nia yu wantɛm wantɛm:
- Chɛst de pen
- Diziz we pɔsin kin gɛt
- Fiva we pas 103 digri F (39.4 digri sɛlshiɔs)
- Bɔrku pen wae nɔr kin stɔp pan ɔl wae yu de tek mɛrɛsin
- Di sayn dɛm wae de sho se yu gɛt strok, fɔ ɛgzampul, yu nɔr de no natin wantɛm wantɛm, i nɔr kin izi fɔ tɔk.
Aw ɛmoglobinopathy de afɛkt mi A1C?
Ɛmoglobinopathy kin mek yu A1C tɛst rizɔlt nɔ kɔrɛkt. Dipen pan yu jenɛtik variant, i kin sho se i gɛt valyu we smɔl ɔ we ay pas aw yu rili gɛt.
If yu gɛt ɛmoglobinopathy, yu dɔktɔ kin tɛl yu fɔ du tɛst we go ɛp fɔ mek dis prɔblɛm nɔ bɔku. Dis A1C na impɔtant tin fɔ pipul dɛm wae gɛt shuga, so nɔr fɔgɛt fɔ tɔk to yu dɔktɔ bɔt dis bak.
Fɔ dɔn, di tin dɛn we impɔtant pas ɔl we yu fɔ mɛmba!
Na nɔmal tin fɔ mek yu fred ɛn wɔri we yu kam fɔ no se yu ɔ yu pikin gɛt wan sik we de ambɔg yu blɔd fɔ ɔl yu layf. Kwɛshɔn dɛm lɛk "Aw ɛmoglobinopathy go afɛkt mi layf?", "A go de fil pen ɔltɛm?", "Aw dis sik go afɛkt mi pikin?" kin kam na yu maynd.
Bɔt di gud nyus na dat , if yu gɛt di rayt tritmɛnt ɛn kɔntrol di sik dɛn we yu gɛt, yu go ebul fɔ liv wɛl as yu ebul.Di bɛst tin we yu go du na fɔ tɔk to yu dɔktɔ. Nɔ delay. If yu no di sik kwik kwik wan ɛn trit yu na di men tin we go mek yu gɛt lɔng layf ɛn gɛt wɛlbɔdi.
Nɔ wɔri, nɔto yu wan de. Dɔktɔ, nɔs, ɛn yu famili go ɛp yu fɔ du dis waka. Bi brayt!
` Ɛmoglobinopathy, blɔd sik, sik dɛn we pɔsin kin gɛt frɔm in mama ɛn papa, ɛmoglobin, anemia, sikɛl sɛl sik, thalassemia
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