We dɔktɔ tɛl yu ɔ yu pikin se yu gɛt wan sik we dɛn kɔl Beta Thalassemia, i impɔtant fɔ no ustɛm yu gɛt. Bikɔs di kayn sik we yu gɛt go sho di sayn dɛn ɛn di tritmɛnt we yu nid. Yu kin fred smɔl we yu yɛri dis nem. Bɔt nɔ wɔri, wi go ɛksplen ɔltin klia wan ɛn simpul wan.
Fɔ tɔk am simpul wan, wetin na beta thalassemia?
Beta thalassemia na wan sik we de ambɔg wi blɔd. Okay, naw lɛ wi si aw dis kin apin insay di bɔdi.
Insay di rɛd blɔd sɛl dɛn na wi blɔd, wan spɛshal prɔtin de we dɛn kɔl ɛmoglobin . Dis na di motoka we de tek ɔksijɛn frɔm di lɔng dɛn ɛn sheb am to di sɛl dɛn ɔlsay na di bɔdi. I tan lɛk ɔksijɛn delivri savis. Insay pɔsin we gɛt beta thalassemia, dis ɛmoglobin prɔtin nɔ de mek lɛk aw i nid. di rizin fכ dis na di chenj, כ mכtεshכn, na wan jin we rilet to hεmoglobin prodakshכn (HBB jin).
We di ɛmoglobin go dɔŋ, di bɔdi in sɛl dɛn nɔ kin gɛt di ɔksijɛn we dɛn nid. Dis na di rizin we mek difrɛn sayn dɛn kin apia. Tri men kayn dis sik de. Lɛ wi luk ɛni wan pan dɛn wan bay wan.
1. Beta Thalassemia we dipen pan transfyushɔn
Dɛn kin kɔl dis bak Thalassemia Major . Dis na di kayn we we rili bad fɔ gɛt thalassemia. dis kכndyushכn kin apin כnli if pikin gεt tu mכtayt kכpi dεm fכ di jin fכ di sik frכm in mama εn papa dεm tu.
Dɛn kin no pikin we gɛt dis sik bifo i ol tu ia .
As mama ɛn papa, wi no se i kin rili at fɔ bia wit di nyus se yu smɔl pikin gɛt siriɔs sik. Na nɔmal tin fɔ lɛ pɔsin fil bad ɛn wɔri. Nɔ de yu wan dis tɛm. Tɔk to yu fambul ɛn padi dɛn bɔt dis. Di sɔpɔt we dɛn go gi wi, dat go mek wi gɛt bɔku trɛnk. Dɔn bak, if yu fil se yu de fil bad ɛn wɔri, aks yu dɔktɔ fɔ rifer yu to pɔsin we de advays yu bɔt yu maynd. I nɔto natin fɔ shem, ɛn i impɔtant fɔ mek yu kɔntinyu fɔ strɔng fɔ yu pikin.
Wetin na di sayn dɛm wae yu kin si pan dis kayn tin?
- Sivɛri anemia: Bikɔs di ɛmoglobin rili smɔl, di pikin kin fil taya ɛn taya ɔltɛm. Dɛn kin tan lɛk se dɛn nɔ gɛt bɛtɛ kɔlɔ.
- Stunted growth: Di pikin in growth de sloslo we yu kɔmpia am wit ɔda pikin dɛm.
- di splin εn di liva we de big:As bɔku bɔku rɛd blɔd sɛl dɛn we dɔn pwɛl de gɛda na di splin ɛn liva, dɛn ɔgan dɛn ya kin big smɔl smɔl as tɛm de go.
- di bon dεm we wik: As di bon mכro gεt fכ mek mכr rεd bכdi sεl dεm, di bon mכro kin swel εn di bon dεm kin tכn εn brit.
- Di delay puberty: As yu de ol, di puberty kin delay bikɔs ɔf di ifɛkt pan di ɔmon wok.
- Di risk fɔ gɛt dayabitis ɛn blɔd we de klɔt kin bɔku bak we pɔsin big.
Di we aw dɛn kin trit am
Fɔ kɔntrol dis bad bad blɔd, i impɔtant fɔ de transfyuz blɔd ɔltɛm . Bɔt we yu kɔntinyu fɔ gi blɔd, di ayɔn we de na di bɔdi kin bɔku we yu nɔ nid. Dis ekstra ayɔn kin pwɛl di liva, at, ɛn di ɛndokrin sistɛm.
Fɔ mek dis nɔ apin, dɛn kin yuz wan tritmɛnt we dɛn kɔl Iron Chelation Therapy . Fɔ tɔk am simpul wan, dis kin pul di aynɔ we pasmak we dɔn gɛda na di bɔdi. Mɛrɛsin dɛn de we dɛn kin gi fɔ dis.
2. Beta Thalassemia we nɔ de dipen pan transfyushɔn
Dɛn kin kɔl dis bak Thalassemia Intermedia . Di sayn dɛm fɔ dis nɔr kin siriɔs lɛk di wan dɛm wae wi bin dɔn tɔk bɔt na di Thalassemia Major.
Bɔrku tɛm, pɔrsin wae gɛt dis sik kin go to dɔktɔ bikɔs ɔf prɔblɛm dɛm lɛk wae i kin taya ɔltɛm, in skin kin yɔlɔ (jaundice), ɔr nɔr kin ebul fɔ gro fayn.
Simptom dɛm wae yu kin si pan dis kɔndishɔn
- Di splin we de mek di bɔdi big.
- Dilay we pɔsin kin rich fɔ bɔn pikin.
- Bɔn dɛn we wik ɛn di risk fɔ brok izi wan.
- Taya we pɔsin kin taya bikɔs i nɔ gɛt bɛtɛ blɔd.
Bikɔs di sayn dɛn fɔ dis sik nɔ kin so bad, bɔku tɛm i nɔ kin nid fɔ transfyushɔn blɔd ɔltɛm . Sɔntɛm yu nɔ go nid fɔ gi blɔd fɔ di res ɔf yu layf. Bɔt dat na yu dɔktɔ fɔ disayd.
3. Beta Talasɛmia Maynɔ
Dɛn kin kɔl dis bak "Thalassemia Trait." Insai wi kontri, bɔrku pipul kin kɔl dis sik "bi wan Thalassemia carrier."
Dis na di kayn we we nɔ kin izi fɔ gɛt thalassemia. Pɔsin wae gɛt dis sik nɔr kin gɛt ɛni ɔda sayn pas smɔl smɔl anemia . Bɔrku pipul dɛn kin liv fɔ lɔng lɔng tɛm ɛn nɔr kin ivin no se dɛn gɛt dis sik. Sɔntɛnde, dɛn kin no am bay we dɛn du blɔd tɛst fɔ ɔda sik.
Bɔrku tɛm, dis sik nɔr kin nid fɔ gɛt tritmɛnt ɔltɛm pas yu fil taya ɔr taya.
Bɔt ivin if yu nɔ gɛt di sik, i impɔtant fɔ no se yu gɛt Thalassemia Trait. Ɛspɛshali if yu de mared ɔ yu de plan fɔ bɔn pikin. Bikɔs if yu patna sɛf gɛt Thalassemia Trait, 1 pan 4 (25%) risk de fɔ mek yu pikin gɛt Thalassemia Major, we na siriɔs sik. Na dat mek i impɔtant fɔ tɔk to yu dɔktɔ bɔt dis ɛn du tɛst.
| Di kayn we we dɛn kɔl Thalassemia | Siriɔs tin we yu fɔ du | Men sayn dɛm ɛn tritmɛnt |
|---|---|---|
| Thalassemia Major we gɛt di sik | I rili siriɔs | Sivɛri anemia, stɔp fɔ gro. I impɔtant fɔ gi pɔsin blɔd ɔltɛm ɛn fɔ gi am ayɛn chelation therapy. |
| Thalassemia intamɛdiya | Moderately siriɔs wan | Modaret anemia, taya. Bɔku tɛm, i nɔ nid fɔ de transfyushɔn ɔltɛm. |
| Thalassemia minor (Maynɔ/Trayt) . | Nɔto siriɔs (kɛriɔ stetɔs) . | Bɔrku tɛm, no sayn nɔr kin de. No tritmɛnt nɔ nid fɔ de. Bɔt fɔ mek pipul dɛn no bɔt sɔntin rili impɔtant we dɛn de plan famili. |
Mɛsej we dɛn kin kɛr go na os
- Beta thalassemia na wan sik we pɔsin kin gɛt frɔm in mama ɛn papa we kin mek di ɛmoglobin nɔ bɔku.
- Tri men kayn dis de: mεjכr (sivεri), intamεdiε (mכdarεt), εn sכm (mild/mכdarεt).
- Thalassemia major nid fɔ gɛt blɔd ɔltɛm ɛn tritmɛnt fɔ pul ayɛn.
- If yu gɛt thalassemia minor (a carrier), yu nɔ kin gɛt di sayn dɛm. Bɔt fɔ no if yu patna sɛf na pɔsin we de kɛr di sik rili impɔtant if yu de op fɔ gɛt wɛlbɔdi pikin.
- Nɔ shem ɔr frayd fɔ tɔk opin wan wit yu dɔktɔ bɔt di kayn thalassemia we yu gɛt, in tritmɛnt, ɛn ɛni kwɛstyɔn we yu go gɛt.
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