yu don eva yehri posin na yu fambul o posin we yu sabi se dem geht "anemic"? Sɔntɛnde dɛn kin fil taya ɔltɛm, dɛn skin kin luk lɛk se i dɔn salo. Yu tink se dis kin bi nɔmal anemia? Yɛs, i nɔ kin bi nɔmal, i kin bi wan sik we pɔsin kin gɛt frɔm in blɔd we dɛn kɔl thalassemia. Nɔ fred we yu yɛri dis nem. Dis nɔto sik we pɔsin kin pas. Lɛ wi tɔk bɔt ɔltin simpul wan ɛn klia wan.
Wetin rili na thalassemia ?
Fɔ tɔk am simpul wan, talasemia na wan sik we wi kin gɛt frɔm wi mama ɛn papa. Pɔsin we gɛt dis sik nɔ kin mek i gɛt wɛlbɔdi rɛd blɔd sɛl dɛn ɛn wan prɔtin we dɛn kɔl ɛmoglobin .
Tink bɔt am, rɛd blɔd sɛl na di delivri savis we de kɛr ɔksijɛn ɔlsay na wi bɔdi. Ɛmoglobin tan lɛk spɛshal bɔks we de pak da ɔksijɛn de ɛn kɛr am go. Insay pɔsin we gɛt thalassemia, dɛn delivri motoka ya (rɛd blɔd sɛl) ɛn ɔksijɛn bɔks (ɛmoglobin) nɔ kin gɛt bɔku, ɔ sɔm prɔblɛm de pan dɛn. So, nɔto ɔl pat na di bɔdi kin gɛt inof ɔksijɛn. Wi kin kɔl dis bak anemia .
Thalassemia gɛt bɔku difrɛn nem dɛn. Sɔntɛm yu dɔn yɛri dɛn nem ya:
- Alfa talasɛmia we dɛn kɔl Alfa thalassemia
- Beta talasɛmia we gɛt di sik
- Kuli in anemia we i gɛt
- Anemia we de na di Mɛditarenian
Aw thalassemia kin kam? Udat dɛn de pan denja?
Talassemia nɔto sik we wi kin gɛt tru it, wata, ɔ frɔm ɔda pɔsin. Na sɔntin we dɛn kin pas frɔm mama ɛn papa to pikin dɛn ɔl tru di jin dɛn.
Tu men pat dɛn de fɔ mek di prɔtin we dɛn kɔl ɛmoglobin. Dɛn na alfa globin ɛn beta globin. di "rεsipi" fכ mek dεn tin ya de insay wi jin dεm. If mistek de na dɛn jin ya (mistek na di risɛp), di bɔdi nɔ go ebul fɔ mek wɛlbɔdi ɛmoglobin as nid de.
- If yu gɛt wan jin we nɔ fayn frɔm wan mama ɔ papa nɔmɔ: Yu kin bi pɔsin we gɛt di sik. Dis min se yu nɔ kin gɛt ɛni ɔ yu nɔ kin gɛt bɛtɛ sayn, bɔt yu kin pas di jin we nɔ fayn to yu pikin dɛn.
- If yu gɛt di jin dɛn we nɔ fayn frɔm yu mama ɛn papa dɛn ɔl tu: Yu kin gɛt smɔl, mɔdaret, ɔ siriɔs thalassemia.
Dɛn kin si dis sik pan pipul dɛm na Eshia kɔntri dɛm lɛk Sri Lanka, Midul Is, Afrika, ɛn Mɛditarenian kɔntri dɛm lɛk Gris ɛn Turkey.
Wetin na di men kayn thalassemia?
Dɛn sheb di thalassemia to tu men kayn, i go dipen pan us pat pan di ɛmoglobin fɔmula we nɔ fayn.
| Di kayn we we dɛn kɔl Thalassemia | Simpul ɛksplen |
|---|---|
| Alfa Talasɛmia we dɛn kɔl Alfa Thalassemia | Na bikɔs di jin dɛn we de mek di alfa globin pat pan di ɛmoglobin nɔ fayn. dis involv 4 jin dεm (2 frכm di mama, 2 frכm di papa). Aw di sik kin tranga kin dipen pan di nɔmba fɔ di jin dɛn we nɔ fayn. |
| Beta Thalassemia we gɛt di sik | Na bikɔs di jin dɛn we de mek di beta globin de pat pan di ɛmoglobin nɔ fayn. I involv tu jin dεm (wan frכm di mama εn wan frכm di papa). If dɛn gɛt ɔl tu di jin dɛn we nɔ fayn, di sik kin tranga mɔ ɛn mɔ. |
Alfa Thalassemia Sɔbtayp dɛn
- di stetכs fכ di kכriכ: I gεt 1 difεktiv jin. Nɔ simptom nɔ de.
- Alpha Thalassemia Minor: I gɛt 2 jin dɛn we nɔ fayn. Nɔ ɔ rili smɔl sayn dɛn.
- Ɛmoglobin H Sik: I gɛt 3 jin dɛn we nɔ fayn. Mɔdaret to siriɔs sik dɛn.
- Alpha Thalassemia Major: I gɛt ɔl di 4 jin dɛn we nɔ fayn. Dis na wan sik we rili siriɔs. Bɔku tɛm di pikin kin day na in bɛlɛ ɔ jɔs afta dɛn bɔn am.
Beta Thalassemia Sɔbtayp dɛn
- Beta Thalassemia Minor: I gɛt 1 jin we nɔ fayn. Nɔ ɔ rili mild simptom (carrier state).
- Beta Thalassemia Intermedia: I gɛt 2 jin dɛn we nɔ fayn. Di simptom dɛn we nɔ kin bɔku.
- Beta Thalassemia Major / Cooley’s Anemia: di prεsεns fכ 2 difεktiv jin dεm. Dis na wan sik wae gɛt bɔrku siriɔs sayn dɛm.
Wetin na di sayn dɛm wae de sho se yu gɛt thalassemia?
Di sayn dɛm kin dipen pan di kayn thalassemia we yu gɛt ɛn aw i siriɔs. Sɔm pipul dɛn nɔ kin gɛt ɛni sayn atɔl. Insay di kayn we dɛn we rili bad, di sayn dɛn kin apin bifo di pikin ol 2 ia.
De impɔtant tin na dat, dɛn sayn ya nɔr kin apin pan ɔlman di sem we. Nɔ tink se yu gɛt thalassemia jɔs bikɔs yu gɛt wan ɔ mɔ pan dɛn. If yu gɛt ɛni dawt, mek shɔ se yu go to dɔktɔ.
Dis na sɔm pan di kɔmɔn sayn dɛm:
- Taya pasmak ɛn taya pasmak
- I nɔ izi fɔ blo , yu de swɛt
- Diziz ɛn wik
- Pale ɔ yɔlɔ skin
- Dak urine
- Fil fɔ it
- Stunted growth ɛn delay puberty na pikin dɛn
- di fes shep we nɔ de (especially prominent forehead ɛn cheekbones) .
- di bɛlɛ we de kɔmɔt na do (bikɔs ɔf di liva ɔ di splin we dɔn big) .
- Yu ed kin at ɔltɛm
- Di bon dɛn we wik ɛn i izi fɔ brok
Aw yu go no if yu gɛt thalassemia?
Bɔrku tɛm, if yu nɔr gɛt di sik, dɛn kin no di sik bay we dɛn de du blɔd tɛst ɔltɛm fɔ ɔda rizin. If yu gɛt sɔm kayn sik, yu dɔktɔ go chɛk yu ɛn aks yu bɔt yu famili mɛdikal histri.
Afta dat, i fayn fɔ du sɔm spɛshal blɔd tɛst dɛn, lɛk:
- Kɔmplit Blɔd Kɔnt (CBC): Dis de sho aw di rɛd blɔd sɛl dɛn ɛn di ɛmoglobin de na di blɔd. Dɛn tin ya kin smɔl pan pipul dɛn we gɛt thalassemia.
- Ɛmoglobin Ilɛktrofɔrɛsis: Dis kin mek yu no ustɛm di kayn ɛmoglobin de na yu blɔd ɛn ɔmɔs pan ɛni wan pan dɛn.
- Jɛnɛtik Tɛst: Dis tɛst de ɛp fɔ no us kayn thalassemia yu gɛt.
Diagnosis we yu gɛt bɛlɛ
If yu ɔ yu patna gɛt thalassemia, yu kin tɛst yu pikin fɔ di sik bifo dɛn bɔn di pikin.
- Chorionic Villus Sampling (CVS): dεn de tek sכm sכm sεmpl fכ di plasεnta εn tεst am arawnd 11 wiks we di bεlε de.
- Amniocentesis: we di bεlε de arawnd 16 wik, dεn de tek wan sεmpl fכ di amniotic fluid we de rawnd di pikin εn tεst am.
If dɛn no se yu gɛt dis sik, dɛn go sɛn yu to dɔktɔ we de mɛn yu blɔd.
Wetin na di tritmɛnt fɔ thalassemia?
Di tritmɛnt dipen pan aw di sik kin tranga. Pɔsin wae gɛt wan kayn sik lɛk thalassemia minor nɔr nid ɛni tritmɛnt, bɔt if i gɛt siriɔs tritmɛnt, i nid fɔ gɛt tritmɛnt fɔ ɔl in layf.
Di men we dɛn fɔ trit am na:
1. Blɔd we dɛn kin gi pɔsin
Di wan dɛn we gɛt siriɔs thalassemia nid fɔ gɛt blɔd fɔ mek dɛn gɛt wɛlbɔdi rɛd blɔd sɛl ɛn ɛmoglobin. Bɔku tɛm dɛn kin gɛt fɔ gɛt blɔd ɛvri 2-4 wik . Dis kin mek dɛn gɛt trɛnk fɔ kɔntinyu fɔ du dɛn nɔmal tin dɛn we dɛn nɔ go taya.
2. Chɛleshɔn Tɛrapi
Bikɔs ɔf di blɔd we dɛn kin gi bɔku tɛm ɛn di sik dɛn we dɛn kin gɛt we dɛn de mɛn pipul dɛn, di ayɔn we de na di bɔdi kin bɔku we nɔ nid fɔ de. wi kכl dis ``Ayכn Ovalod.'' Dis εkstra ayכn kin kכlכm insay imכtant כgan dεm lεk di at εn di liva εn pwεl dεm.
So, dɛn kin gi di wan dɛn we de gi blɔd spɛshal mɛrɛsin fɔ pul di ɛkstra ayɔn we kin gɛda na dɛn bɔdi. Dɛn kɔl dis `Chelation Therapy`. Yu kin tek dɛn mɛrɛsin ya lɛk pil ɔ as injɛkshɔn.
3. Ɔda tritmɛnt dɛn
- Bon Mכro כ Stem Sεl Transplant: If yu transplant bon mכro frכm hεlty dona kin kכl thalassemia kכmplit wan sכmtεm. Bɔt dɛn nɔ kin du dis bɔku tɛm bikɔs ɔf di prɔblɛm dɛn we kin apin ɛn i nɔ kin izi fɔ fɛn pɔsin we go gri fɔ gi mɔni.
- Ɔpreshɔn: Sɔm sik pipul dɛn gɛt in spleen we dɔn big, we nid fɔ ɔpreshɔn fɔ pul am (splenectomy).
- Mεdikeshכn dεm: dεn kin yus mεdikeshכn dεm lεk `Luspatercept (Reblozyl)` εn `Hydroxyurea` fכ εp fכ mek rεd bכdi sεl dεm εn kכntrכl di simptom dεm.
- Sɔplɛnt: Yu dɔktɔ kin tɛl yu fɔ gi yu vaytamɛn dɛn lɛk fɔlik asid, we kin ɛp fɔ mek yu gɛt rɛd blɔd sɛl. Bɔt nɔ tek ayɛn sɔpɔtmɛnt dɛn we yu nɔ gɛt dɔktɔ advays fɔ ɛni rizin.
Aw fɔ liv wɛl wit thalassemia?
Fɔ kia fɔ dɛn tin ya rili impɔtant fɔ mek pɔsin we gɛt thalassemia liv wɛl ɛn gladi layf.
- Fɔ fala yu dɔktɔ in instrɔkshɔn dɛn: Fɔ fala yu dɔktɔ in tritmɛnt jɔs lɛk aw dɛn tɛl yu fɔ du am, di rayt tɛm, ɛn mek shɔ se yu go na di klinik dɛn.
- It fayn fayn it: It balans it wit bɔku frut ɛn vɛjitebul. Aks yu dɔktɔ if yu nid fɔ stɔp fɔ it tin dɛn we gɛt ayɔn (mit, fish, ligɛm) ɛn it dɛn we gɛt ayɔn.
- Gɛt di vaysin: Gɛt ɔl di vaysin dɛn we yu dɔktɔ dɔn tɛl yu, mɔ di wan dɛn we tan lɛk di flu shot, bikɔs yu kin gɛt mɔ risk fɔ gɛt di sik.
- Ɛksasayz:Ɛnjɔy layt ɛksesaiz we go fayn fɔ yu bɔdi. Tɔk to yu dɔktɔ bɔt am.
- Klin: Yu fɔ de fa frɔm pipul dɛn we sik. Wash yu an ɔltɛm.
- Nɔ smok ɛn drink rɔm: Dɛn tin ya bad fɔ yu at ɛn yu bon.
- Mental wɛl bɔdi: Fɔ liv wit sik wae nɔr de dɔn, kin mek yu fil fayn. If yu de fil strɛs ɔr de fil bad, tɔk to yu fambul, padi, ɔr pɔsin we de gi advays bɔt yu maynd .
Mɛsej we dɛn kin kɛr go na os
- Talassemia na wan sik we dɛn kin gɛt frɔm in mama ɛn papa, nɔto sik we kin kam pan pɔsin.
- Dis kin mek di bɔdi nɔ ebul fɔ mek ɛmoglobin ɛn rɛd blɔd sɛl dɛn.
- Di sayn dɛm kin kɔmɔt frɔm wae yu nɔr gɛt ɛni sayn to bad bad tin wae kin mek yu layf de pan denja.
- If dɛn gɛt di rayt mɛrɛsin (blɔd transfyushɔn, chelation therapy), bɔku pan di sik pipul dɛn kin liv nɔmal, lɔng layf.
- If yu tink se yu ɔ sɔmbɔdi na yu famili gɛt thalassemia, mek shɔ se yu go to dɔktɔ.
- Bifo yu bigin famili, i rili impɔtant fɔ go to jenɛtik kɔyl fɔ no if yu ɔ yu patna na pɔsin we gɛt di sik.











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