Yu pikin kin brayt ɛn taya ɔltɛm? Yu tink se na Thalassemia?

Yu tink se yu smɔl pikin kin taya ɔltɛm? I nɔ de rɔn rawnd ɛn ple lɛk ɔda pikin dɛn? Yu tink se i kin rili want fɔ it? I dɔn ɛva fil lɛk se i nɔ gɛt bɛtɛ trɛnk? Na nɔmal tin fɔ mek ɛni mama ɔ papa fil bad bad wan we dɛn si tin dɛn lɛk dis. Pan ɔl we bɔku tɛm dɛn kin gɛt dɛn sik ya bikɔs ɔf nɔmal tin, sɔntɛnde, wan mɛrɛsin kin de biɛn dis, lɛk Thalassemia. So tide, lɛ wi tɔk bɔt wetin na Thalassemia, aw i kin afɛkt wi bɔdi, ɛn wetin na di tritmɛnt fɔ am.

Wetin rili na Thalassemia?

Fɔ tɔk am simpul wan, talasemia na wan sik we de ambɔg wi blɔd . I nɔ kin pas pɔsin. Dat min se i nɔ de skata frɔm wan pɔsin to ɔda pɔsin lɛk kol. Na sɔntin we wi kin gɛt frɔm wi mama ɛn papa tru wi jin.

Fɔ ɔndastand dis smɔl, lɛ wi fɔs tɔk smɔl bɔt di rɛd blɔd sɛl dɛn we de na wi blɔd. Tink bɔt dɛn rɛd blɔd sɛl ya as dilivri savis we de kɛr ɔksijɛn ɔlsay na wi bɔdi. Di motoka we dis delivri savis de yuz, dat na di kat we de kɛr ɔksijɛn, dɛn kɔl am ɛmoglobin . Ɛmoglobin na spɛshal prɔtin we de insay di rɛd blɔd sɛl dɛn. Dis na di tin we de kɛr ɔksijɛn kɔmɔt na wi lɔng ɛn sheb am to ɛvri sɛl na di bɔdi.

Pɔsin we gɛt thalassemia nɔ kin ebul fɔ mek dis prɔtin we dɛn kɔl ɛmoglobin inof. Jɔs lɛk we dɛn de mek motoka, if pat dɛn nɔ de ɔ if dɛn yuz pat dɛn we nɔ impɔtant, di motoka nɔ go wok fayn. Dis kin mek di nɔmba fɔ di wɛlbɔdi rɛd blɔd sɛl dɛn na di bɔdi go dɔŋ. Wi kin kɔl dis kɔndishɔn we di rɛd blɔd sɛl dɛn we nɔ gɛt bɛtɛ blɔd nɔ gɛt bɛtɛ blɔd .

So we di sɛl dɛn na di bɔdi nɔ gɛt di rayt ɔksijɛn, dɛn nɔ kin ebul fɔ mek di ɛnaji we dɛn nid. Na dat mek di wan dɛn we gɛt thalassemia kin gɛt difrɛn sayn dɛn.

Udat de pan denja fɔ gɛt dis sik?

Dɛn tink se di jɛnɛtik muteshon we de mek dis kin apin fɔs na mɔtalman as wan we fɔ protɛkt pɔsin frɔm malaria. So, pipul dɛm we gɛt jɛnɛtik tayt wit rijyɔn dɛm usay malaria bɔku, lɛk Afrika, sawt Yurop, ɛn kɔntri dɛm na Wɛst, Sawt, ɛn Is Eshia, kin gɛt mɔ risk fɔ gɛt thalassemia. Bikɔs Sri Lanka na Sawt Eshia kɔntri bak, pipul dɛn we gɛt thalassemia ɛn pipul dɛn we sik de pan wi pipul dɛn.

Wetin kin mek pɔsin gɛt thalassemia? Lɛ wi tek tɛm luk gud wan.

dat "oksijen kat" we dεn kכl εmoglobin we a bin tכk bכt na fכ protin chen dεm. Dɛn kɔl tu pan dɛn alfa globin chen, ɛn dɛn kɔl di ɔda tu beta globin chen.

wi kin gεt di "instrכkshכn" כ "kכd" fכ mek dεn chen dεm ya frכm di jin dεm we wi gεt frכm wi mama εn papa. Tink bɔt dɛn jin ya as risɛp fɔ mek it. If ɛni fɔlt ɔ mistek de na di risɛp, dɛn nɔ go ebul fɔ pripia di it fayn. semweso, if eni fכlt כ dεfisit de na dεn jin dεm ya, di alfa כ beta globin chen dεm nכ go fכm fayn fayn wan. Na da tɛm de wan sik we dɛn kɔl thalassemia kin apin.

• Alfa globin chen dεm: Dis wan dεm nid 4 jin dεm fכ mek. Tu frɔm di mama ɛn tu frɔm di papa.
• Beta globin chen: Dɛn tin ya nid tu jin fɔ mek. Wan frɔm di mama ɛn wan frɔm di papa.

di kayn thalassemia we yu de gεt de dipכnt pan uswan pan dεn alfa כ beta chen dεm ya gεt jin dεfεkt. Dɛn kin no aw di sik siriɔs bay di nɔmba fɔ di jin dɛn we nɔ fayn.

Wetin na di men kayn thalassemia?

Dɛn kin sheb di thalassemia to sɔm men lɛvul dɛn dipen pan aw di sik siriɔs. Dat min se, thalassemia trayt, thalassemia minor, thalassemia intermedia, ɛn thalassemia major . Insai carrier state, yu nɔr kin gɛt ɛni symptom. Ɔ yu kin jɔs gɛt smɔl smɔl anemia. Thalassemia major na di sik wae de pasmak wae nid fɔ gɛt tritmɛnt.

tu men kayn dεm de, i dipכnt pan if di jεnεtik difεkt de insay di alfa chen dεm כ beta chen dεm.

1. Alfa Talasemia

dis kכndyushכn kin apin we difεkt de na wan כ mכr pan di 4 jin dεm we de mek alfa globin chen dεm. Aw di sik kin tranga kin dipen pan di nɔmba fɔ di jin dɛn we nɔ fayn. Lɛ wi luk dis insay wan simpul we fɔ ɔndastand am.

2. Beta Thalassemia we de mek pɔsin gɛt sik

dis kכndyushכn kin apin we difεkt de na wan כ tu pan di tu jin dεm we de mek beta globin chen (wan frכm di mama, wan frכm di papa).

• Wan jin we nɔ fayn: Dɛn kɔl dis sik beta thalassemia minor ɔ carrier state. Di sayn dɛm nɔ kin rili smɔl.
• Tu jin dɛm we nɔ fayn: Di sayn dɛm kin kɔmɔt frɔm smɔl to siriɔs.
• di intamεdiεt kכndyushכn dεn kכl am Thalassemia intermedia .
• Di kayn we we kin rili bad na in dɛn kɔl beta thalassemia major ɔ Cooley’s anemia . Dɛn pipul ya nid fɔ gɛt mɛrɛsin ɔltɛm.

Wetin na di sayn dɛm wae de sho se yu gɛt thalassemia?

Di sayn dɛm wae yu kin gɛt kin dipen ɔl pan di kayn thalassemia wae yu gɛt ɛn aw i kin tranga.

Nɔr simptom ɔr simptom wae nɔr kin rili smɔl

If yu nɔ gɛt jɔs wan pan di 4 alfa jin dɛn, sɔntɛm yu nɔ go gɛt ɛni sayn. If tu alfa jin ɔ wan beta jin nɔ fayn, yu nɔ go gɛt ɛni sayn atɔl. Ɔ yu kin jɔs gɛt smɔl smɔl anemia sayn dɛm, lɛk fɔ fil taya ɔltɛm.

Di simptom dɛm we de bitwin di sik dɛm (Thalassemia Intermedia) .

Dɛn pipul ya kin gɛt ɔda sayn dɛn apat frɔm smɔl smɔl anemia.

• Fɔ nɔ ebul fɔ gro fayn: Pikin in ayt ɛn wet nɔ de go ɔp akɔdin to in ej.
• Dilay we pɔsin kin rich fɔ bɔn pikin.
• Di bon dɛn we nɔ de wok fayn:Kɔndishɔn dɛn lɛk ɔstioporosis.
• di splin we big: di splin na wan כgan we de na di lεft say na wi bכdi we de εp fכ fכt infεkshכn.

Di sayn dɛm wae gɛt siriɔs sik (Thalassemia Major) .

siriכs simptom dεm kin apin pan kכndishכn dεm lεk tri alfa jin dεfεkt (Hεmoglobin H sik) εn beta thalassemia major (Cooley’s anemia). Dɛn sayn ya kin bigin fɔ sho bifo di pikin ol tu ia .

Apat frɔm di sayn dɛm wae wi dɔn tɔk bɔt, yu kin si dɛn tin ya:

• Di it nɔ de te.
• Pale ɔ yɔlɔ skin (jaundice).
• Dak urine (we gɛt ti kɔlɔ).
• di abnכmaliti dεm na di fes bon dεm (biכs di sכkul bon dεm de gro pasmak).

Aw fɔ no bɔt dis sik?

Bɔku tɛm dɛn kin no se i gɛt mɔdaret ɛn siriɔs thalassemia we dɛn smɔl, bikɔs di sayn dɛn 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 aw di ɛmoglobin de na di blɔd, di nɔmba fɔ di rɛd blɔd sɛl dɛn, ɛn di sayz we dɛn gɛt. Pipul dɛn we gɛt thalassemia nɔ kin gɛt bɛtɛ wɛlbɔdi rɛd blɔd sɛl ɛn dɛn nɔ kin gɛt bɛtɛ ɛmoglobin. Di rɛd blɔd sɛl dɛn kin smɔl bak pas aw i kin bi.
• rεtikulכsayt kכnt: dis de mכsu di nכmba fכ di nyu rεd bכdi sεl dεm we dεn fכm. Dis kin mek yu no if yu bon mɛro de mek inof rɛd blɔd sɛl dɛn.
• Stɔdi fɔ ayɛn: Dis tɛst de ɛp fɔ no kɔrɛkt wan if yu anemia na bikɔs yu nɔ gɛt ayɔn ɔ na thalassemia.
• εmoglobin εlektrofכresis: Dis na patikyula implεnt tεst fכ no if yu gεt beta thalassemia.
• Jɛnɛtik tɛst: Dɛn kin yuz dis tɛst fɔ no if pɔsin gɛt alfa thalassemia.

Wetin na di tritmɛnt fɔ thalassemia?

Di standad tritmɛnt fɔ siriɔs kɔndishɔn lɛk thalassemia major na blɔd transfyushɔn ɛn tritmɛnt fɔ pul ayɔn.

• Blɔd Transfyushɔn: Fɔ tɔk am simpul wan, dis na blɔd transfyushɔn we de na do. Blɔd we gɛt wɛlbɔdi rɛd blɔd sɛl dɛn de gi insay di bɔdi tru wan vein. Dis kin mek di rɛd blɔd sɛl dɛn we gɛt wɛlbɔdi ɛn di ɛmoglobin lɛvɛl kam bak. Insay siriɔs thalassemia kɔndishɔn (e.g., beta thalassemia major), dɛn kin nid fɔ transfyushɔn blɔd ɔltɛm, lɛk ɛvri 2-4 wik .
• Ayɔn Chɛleshɔn Tɛrapi: .Wan pan di big sayd ɛfɛkt dɛn we pɔsin kin gɛt we i de gi blɔd ɔltɛm na we di ayɔn we nɔ nid fɔ de na di bɔdi. Wi kɔl dis ayɛn ɔvalod . Dis ekstra ayɔn kin gɛda na impɔtant ɔgan dɛn lɛk wi at ɛn liva ɛn pwɛl dɛn. So, dɛn kin gi pipul dɛn we kin gɛt blɔd bɔku tɛm mɛrɛsin (pil ɔ injɛkshɔn) we kin pul dis ɛkstra ayɔn na dɛn bɔdi.
• Fɔlik Asid Suplimɛnt: Dɛn kin gi fɔlik asid fɔ ɛp di bɔdi fɔ mek di blɔd sɛl dɛn we gɛt wɛlbɔdi.
• Bon Mכro εn Stem Sεl Transplant: Dis na di כnli tritmεnt naw we kin kכl thalassemia kכmplit wan . Bɔt fɔ dis, di pɔsin nid pɔsin we gɛt wɛlbɔdi we go gri wit am ɔl. Bɔku tɛm, na brɔda ɔ sista. Dis na tritmɛnt we rili risky ɛn kɔmpleks.
• Luspatercept: Dis na vaysin we dɛn kin gi ɛvri tri wik. I de wok bay we i de ɛp di bɔdi fɔ mek mɔ rɛd blɔd sɛl dɛn.

Aw layf tan lɛk wit dis sik? Yu tink se dɛn go ebul fɔ stɔp am?

If yu gɛt thalassemia minor, yu kin ɛkspɛkt fɔ liv nɔmal layf. Ilɛksɛf yu sik nɔ bɔku ɔ i bad, if yu fala di tritmɛnt plan we dɛn dɔn tɛl yu fɔ du (blɔd transfyushɔn ɛn tritmɛnt fɔ pul ayɛn) ɛksaktɔli, yu gɛt gud chans fɔ liv lɔng layf.

Dis sik na jenɛtik, so wi nɔ go ebul fɔ avɔyd am. Bɔt fɔ tɛst yu jɛnɛtiks kin ɛp yu fɔ no if yu ɔ yu patna gɛt di thalassemia jin. Fɔ no dis infɔmeshɔn rili impɔtant fɔ mared pipul dɛn we de plan fɔ bɔn pikin. Tɔk to yu dɔktɔ fɔ gɛt mɔ advays bɔt dis.

Dɔn, thalassemia na sik we pɔsin kin ebul fɔ kɔntrol. De kayn tritmɛnt wae yu nid ɛn aw ɔltɛm yu nid am go dipen pan aw yu sik bad. I impɔtant fɔ mek yu tɔk to yu dɔktɔ bɔt yu sik ɛn yu plan fɔ kia fɔ yu fɔ lɔng tɛm.