Yu kin fil taya ɛn taya ɔltɛm? Sɔntɛm yu skin dɔn pale smɔl? Dis nɔto jɔs random tin, sɔntɛm dis anemia, dat na, blɔd dɛfisiɛns, kin bi bikɔs ɔf dis. Tide wi de tɔk bɔt ‘Thalassemia’, we na wan sik we pɔsin kin bɔn wit we gɛt fɔ du wit blɔd, we kin apin to bɔku pipul dɛn na wi kɔntri. Nɔ fred we yu yɛri dis nem. Lɛ wi ɔndastand ɔltin bɔt dis simpul wan.
Wetin rili na Thalassemia?
Fɔ tɔk am simpul wan, talasemia na wan sik we pɔsin kin gɛt frɔm in blɔd we pɔsin kin gɛt frɔm di tɛm we dɛn bɔn am . I nɔto sik we pɔsin kin pas. Dis sik kin mek wi bɔdi nɔ ebul fɔ mek inof wɛlbɔdi ɛmoglobin.
Naw yu go de wɔnda wetin na ɛmoglobin. Ɛmoglobin na spɛshal prɔtin we de insay wi rɛd blɔd sɛl dɛn. I de wok lɛk ‘delivery service’ we de kɛr ɔksijɛn ɔlsay na wi bɔdi. Dis paket we dɛn kɔl ɛmoglobin de go to ɛvri sɛl na di bɔdi bay motoka dɛn we dɛn kɔl rɛd blɔd sɛl.
Pɔsin we gɛt thalassemia nɔ kin gɛt wɛlbɔdi ɛmoglobin na in bɔdi. So, di nɔmba fɔ di wɛlbɔdi rɛd blɔd sɛl dɛn na di bɔdi kin go dɔŋ bak. dis kכndyushכn we di rεd bכdi sεl dεm dכn dכn na in wi kכl anemia , כ ‘blכd dεficiency’. We di bɔdi in sɛl dɛn nɔ gɛt di ɔksijɛn we dɛn nid, difrɛn sayn dɛn kin bigin fɔ sho.
Dat min se yu kin fil tin dɛn lɛk dis:
- Fɔ fil ɔltɛm fɔ taya pasmak ɛn taya.
- I nɔ kin izi fɔ yu fɔ blo.
- Fɔ fil kol.
- Fɔ fil se yu gɛt diziz.
- Pale skin.
Wetin kin mek pɔsin gɛt thalassemia? Udat dɛn de pan big risk?
Talassemia kin kam bikɔs ɔf wan prɔblɛm we de na wi jin dɛn. Tink bɔt dɛn jin ya lɛk ‘program kɔd’ we gɛt instrɔkshɔn bɔt aw ɔltin na wi bɔdi fɔ fɔm. di hεmoglobin protin de fכm akɔdin to di instrכkshכn frכm dεn jin dεm ya. If sɔntin nɔ rayt wit dɛn instrɔkshɔn ya, ɔ if pat pan dɛn nɔ de, di bɔdi nɔ go ebul fɔ mek ɛmoglobin we gɛt wɛlbɔdi. Wi kin gɛt dɛn jin ya we nɔ fayn frɔm wi mama ɛn papa. Na dat mek dɛn kɔl am sik we pɔsin kin gɛt frɔm in mama ɛn papa.
wan hεmoglobin mכlekyul na fכ protin chen dεm: tu alfa globin chen dεm εn tu beta globin chen dεm.
- fכ jin dεm nid fכ mek alfa globin chen dεm (tu frכm εvri mama εn papa).
- tu jin dεm nid fכ mek beta globin chen dεm (wan frכm εvri mama εn papa).
If difεkt de na di jin dεm we de mek dεn alfa כ beta chen dεm, thalassemia de apin. Dɛn kin no aw di sik siriɔs bay di nɔmba fɔ di jin dɛn we nɔ fayn.
Dɛn biliv se dɛn jɛnɛtik muteshon ya bin kam as wan we fɔ protɛkt pipul dɛn frɔm malaria, mɔ na rijyɔn dɛn lɛk Afrika, Sawt Yurop, ɛn Eshia (inklud wi kɔntri), usay malaria bin bɔku insay istri. So, dɛn kin si talasemia pan pipul dɛn na dɛn rijyɔn ya.
Wetin na di men kayn thalassemia?
Dɛn kin sheb di talasemia to sɔm men lɛvul dɛn bay aw di sik siriɔs. Dat min se i kin kכmכt frכm asymptomatic carrier state (trait), to minכr, intamεdiεt, εn mεjכr. Di kayn we we kin rili bad, we na Thalassemia Major, kin nid fɔ kɔntinyu fɔ gɛt tritmɛnt.
Thalassemia dεn sheb am to tu men tכp dεm, i dipכnt pan if di jεnεtik dεfεkt de na di alfa chen dεm כ beta chen dεm.
1. Alfa Talasemia
2. Beta Thalassemia we de mek pɔsin gɛt sik
Lɛ wi ɔndastand dɛn tu kayn ya mɔ ditayli frɔm di tebul we de dɔŋ ya.
| Di kayn we we dɛn kɔl Thalassemia | Di inflɛns we di jin dɛn gɛt | Nature ɛn di sayn dɛm fɔ di sik |
|---|---|---|
| Alfa Talasɛmia we dɛn kɔl Alfa Thalassemia | ||
| Difɛkt na wan jin | wan difεkt na 1 pan di 4 alfa globin jin dεm. | No sayn nɔ de fɔ sho se i gɛt dis sik. Bɔrku tɛm, dɛn pipul ya na jɔs pipul dɛm wae gɛt dis sik. |
| Tu tin dɛn we nɔ fayn na di jin | wan difεkt na 2 pan di 4 alfa globin jin dεm. | Yu kin nɔr gɛt ɛni sayn, ɔr yu kin sho sayn dɛm wae de sho se yu nɔr gɛt bɛtɛ blɔd (lɛk wae yu taya smɔl). |
| Tri jin dɛm we nɔ fayn (Hɛmoglobin H sik) . | wan difεkt na 3 pan 4 alfa globin jin dεm. | Di sayn dɛm kin kɔmɔt frɔm mɔdaret to siriɔs. Anemia kin kɔntinyu fɔ de ɔlsay na in layf. |
| Difɛkt na ɔl di 4 jin dɛn | כl di 4 alfa globin jin dεm nכ de wok fayn. | Wan sik we rili siriɔs. Bɔku tɛm di pikin kin day na in bɛlɛ ɔ jɔs afta dɛn bɔn am. |
| Beta Thalassemia we gɛt di sik | ||
| Difɛkt na wan jin (Beta thalassemia minor) . | wan difεkt na 1 pan di 2 beta globin jin dεm. | Dɛn kin si sɔm kayn sayn dɛn we nɔ kin gɛt bɛtɛ blɔd we nɔ gɛt bɛtɛ blɔd. Bɔrku pipul dɛn kin liv wɛl bɔdi layf as pipul dɛm wae gɛt dis sik. |
| Difεkt na di tu jin dεm (Beta thalassemia major / Cooley’s Anemia) . | Dɛn tu beta globin jin dɛn ya nɔ fayn. | Di sayn dɛm kin kɔmɔt frɔm intamɛdiet to di men. Di sik we kin rili bad na in dɛn kɔl Cooley’s anemia ɛn i nid fɔ kɔntinyu fɔ gɛt tritmɛnt. |
Wetin na di sayn dɛm we pɔsin kin gɛt we i gɛt thalassemia?
Di sayn dɛm wae yu kin gɛt kin dipen pan di kayn thalassemia wae yu gɛt ɛn aw i kin tranga.
Kes dɛm we nɔ gɛt ɛni sayn
If yu gɛt wan alfa jin dɛfekt ɔ yu gɛt wan kayn sik lɛk beta thalassemia minor, yu nɔ go gɛt ɛni sayn atɔl . Ɔ yu kin fil sɔntin lɛk fɔ taya smɔl.
Mild ɛn mɔdaret simptom dɛm
Na di kayn kes dɛm we nɔr tu, lɛk beta thalassemia intermedia, apat frɔm di smɔl smɔl anemia simptom dɛm, dɛn tin ya kin apin:
- Pikin dɛn kin gro sloslo.
- Dilay we pɔsin kin rich fɔ bɔn pikin.
- di bon abnכmaliti dεm (e.g. כstioporosis).
- di splin big (dis na כgan we de fכt infεkshכn).
Siriɔs simptom dɛn
pan siriכs kכndyushכn, lεk difεkt na tri alfa jin dεm (Hemoglobin H disease) כ beta thalassemia major (Cooley's anemia), di sayn dεm de sho bifo di pikin ol 2 ia. Apat frɔm di sayn dɛm we wi dɔn tɔk bɔt, yu kin si dɛn tin ya:
- I nɔ kin want fɔ it igen.
- Pale ɔ yɔlɔ skin (lɛk janda).
- Dak, ti kɔlɔ urine.
- Di bon dɛn we de na di fes nɔ de gro fayn.
Aw fɔ no dis sik kɔrɛkt wan?
Bɔku tɛm dɛn kin no se i gɛt mɔdaret ɛn siriɔs thalassemia we dɛn smɔl. Dis na bikɔs di sayn dɛm kin bigin fɔ sho insay di fɔs tu ia we di pikin dɔn liv. Yu dɔktɔ kin tɛl yu fɔ du difrɛn blɔd tɛst fɔ no if yu gɛt di sik.
- Complete Blood Count (CBC): Dis de sho di nɔmba fɔ di rɛd blɔd sɛl dɛn, dɛn saiz, ɛn di ɛmoglobin lɛvɛl. Pipul dɛn we gɛt thalassemia nɔ gɛt bɛtɛ wɛlbɔdi rɛd blɔd sɛl, ɛn dɛn kin smɔl.
- Ayɔn lɛvɛl tɛst: Dis tɛst impɔtant fɔ no difrɛns bitwin ayɔn dɛfisiɛns ɛn thalassemia.
- Ɛmoglobin Ilɛktrofɔrɛsis: Dɛn kin yuz dis tɛst spɛshal wan fɔ no if pɔsin gɛt beta thalassemia.
- Jɛnɛtik Tɛst: Dɛn kin yuz dɛn tɛst ya fɔ kɔnfɔm alfa thalassemia ɛn fɔ no di wan dɛn we gɛt di sik.
Wetin na di tritmɛnt fɔ thalassemia?
Di tritmɛnt we dɛn kin pik kin dipen pan aw di sik kin tranga. Bɔku tɛm, di wan dɛn we nɔ kin gɛt bɛtɛ sik nɔ kin nid fɔ gɛt tritmɛnt. Bɔt sɔm men tritmɛnt dɛn de fɔ siriɔs kes dɛm.
- Blɔd Transfyushɔn: Fɔ tɔk am simpul wan, ‘blɔd gi’ . Dɛn kin gi di pɔsin di blɔd we kɔmɔt frɔm pɔsin we gɛt wɛlbɔdi tru wan vein fɔ mek i gɛt wɛlbɔdi rɛd blɔd sɛl dɛn ɛn di ɛmoglobin lɛvɛl bak. Di wan dɛn we gɛt beta thalassemia major nid fɔ gɛt blɔd ɔltɛm, bɔku tɛm ɛvri 2-4 wik.
- Iron Chelation Therapy: If yu transfyuz yu blɔd ɔltɛm, dat kin mek di ayɔn lɛvɛl na di bɔdi go ɔp we yu nɔ nid. Dɛn kɔl dis ‘ayɔn ɔvalod’. Dis ayron we pasmak kin pwɛl di ɔgan dɛn lɛk di at ɛn di liva. fכ dat, dεn kכl dεm mεdikeshכn dεm we de pul dis εksyכs ayron kכmכt na di bכdi ‘ayכn chεlashכn’. Dɛn kin tek dɛn tin ya insay pil fɔm.
- Fɔlik Asid Suplimɛnt: Dɛn kin gi fɔlik asid fɔ ɛp di bɔdi fɔ mek di blɔd sɛl dɛn we gɛt wɛlbɔdi.
- Bɔn Mɛrɔ Transplant: Dis na di wangren tritmɛnt we go ebul fɔ mɛn thalassemia kpatakpata . Bɔt na ɔpreshɔn we rili gɛt prɔblɛm ɛn we nɔ izi fɔ du. Dis nid fɔ gɛt wɛlbɔdi pɔsin we de gi mɔni ɛn we go gri wit di pɔsin we sik, bɔku tɛm na in brɔda ɛn sista.
Lan bɔt di prɔblɛm dɛn we kin apin, di tritmɛnt, ɛn aw i kin liv.
If dɛn nɔ trit am fayn, di men prɔblɛm na we di at, liva, ɛn di gland dɛn we de mek ɔmon de pwɛl, mɔ bikɔs ɔf di ayron we pasmak. So, as dɛn dɔn tɛl amAyron chelation tritmɛnt rili impɔtant.
Pan ɔl we dɛn kin mɛn di sik wit bon mɛrɔ transplant, nɔto ɔlman kin gɛt dis tritmɛnt bikɔs i nɔ kin izi fɔ fɛn pɔsin we fit fɔ gi di sik ɛn di prɔblɛm dɛn we kin apin we dɛn du di ɔpreshɔn.
We i kam pan aw yu go liv yu layf, if yu gɛt thalassemia minor, yu kin ɛkspɛkt fɔ gɛt kɔmplit nɔmal layf. Ivin if yu gɛt mɔdaret ɔ siriɔs sik, if yu fala di tritmɛnt we dɛn gi yu (blɔd transfyushɔn ɛn pul ayɛn) ɛksaktɔli, yu gɛt gud chans fɔ liv lɔng ɛn wɛlbɔdi layf . At sik na di men tin we kin mek pɔsin day. So, i impɔtant fɔ du tritmɛnt fɔ pul ayɛn ɛn nɔ skip.
Yu tink se dɛn go ebul fɔ avɔyd di sik? Ɛn di kia we dɛn bin nid fɔ kɔntinyu fɔ kia fɔ
Thalassemia na sik we pɔsin kin gɛt we i kam pan jɛnɛtiks, so wi nɔ go ebul fɔ mek i nɔ apin. Bɔt fɔ tɛst yu jɛnɛtiks kin ɛp yu fɔ no if yu ɔ yu patna na pɔsin we gɛt di thalassemia jin. If yu de plan fɔ bɔn pikin, i impɔtant fɔ no dis infɔmeshɔn. Fɔ no mɔ, go to pɔsin we de advays yu bɔt yu jɛnɛtiks ɔ yu dɔktɔ.
If yu gɛt thalassemia, yu go nid fɔ du blɔd tɛst (CBC) ɔltɛm ɛn chɛk aw yu gɛt ayron. Yu dɔktɔ kin tɛl yu bak fɔ mek dɛn tɛst yu at ɛn yu liva fɔ wok wan tɛm insay di ia.
Mɛsej we dɛn kin kɛr go na os
- Thalassemia nɔto sik we pɔsin kin gɛt, na wan sik we dɛn kin gɛt frɔm mama ɛn papa.
- Dis sik kin kɔmɔt frɔm wan stet we de kɛr pɔsin we nɔ gɛt ɛni simptom to wan siriɔs kɔndishɔn we nid fɔ gɛt tritmɛnt ɔltɛm.
- Fɔ mek di wan dɛn we gɛt thalassemia major liv lɔng, wɛlbɔdi layf, i impɔtant fɔ tek blɔd ɔltɛm ɛn fɔ pul ayɛn.
- If yu famili dɔn gɛt thalassemia, i go fayn fɔ mek yu tɔk to yu dɔktɔ bɔt am ɛn du tɛst fɔ yu jɛnɛtiks bifo yu bɔn pikin.
- Nɔr ignore de symptom dɛm lɛk taya ɛn paleness. Ɔltɛm, go to dɔktɔ fɔ advays yu.
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