Yu tink se yu smɔl pikin kin taya ɔltɛm? I nɔ lɛk fɔ it bɔku? I dɔn notis se i paler smɔl pas ɔda pikin dɛn? Pan ɔl we dɛn tin ya kin tan lɛk nɔmal tin, sɔntɛnde, sɔm kayn tin kin de we nɔ kin apin biɛn dis we wi nɔ kin yɛri bɔku bɔt. Tide wi go tɔk bɔt wan pan dɛn kayn tin ya we nɔ kin apin so ɔltɛm, bɔt if yu manej am fayn, yu kin liv wit am fayn fayn wan. Dat na Daymɔnd-Blakfan Anemia, ɔ `(Daymɔnd-Blakfan Anemia - DBA)`.
Fɔ tɔk am simpul wan, wetin na Daymɔnd-Blakfan Anemia (DBA)?
Imajin se wi gɛt big faktri insay wi bɔdi we de mek blɔd. Wi kin kɔl am di bon mɛro . Di men wok we dis faktri de du na fɔ mek rɛd blɔd sɛl dɛn, we na di smɔl smɔl wokman dɛn we de kɛr ɔksijɛn ɔlsay na wi bɔdi. DBA na wan sik we dis faktri we dεn kכl bon mכro nכ kin mek inof rεd bכdi sεl dεm. Dis nɔ kin apin so ɔltɛm, we min se dis sik kin apin to lɛk wan pan ɛvri 500,000 pikin dɛn.
Dis na wan sik we pɔsin kin gɛt frɔm in jɛnɛtiks . Dis min se na bikɔs di jin dɛn we de na wi bɔdi in sɛl dɛn chenj. Dis kin mek di nɔmba fɔ di rɛd blɔd sɛl dɛn na di bɔdi go dɔŋ. Wi kin kɔl dis sik anemia , ɔ blɔd dɛfisiɛns ɔ anemia. DBA na wan sik we pɔsin kin gɛt fɔ ɔl in layf. Bɔt nɔ wɔri, if yu gɛt gud tritmɛnt, bɔku pipul dɛn kin kɔntrol dɛn sik ɛn liv fayn layf .
Wetin na di sayn dɛm fɔ pɔrsin wae gɛt DBA?
De sayn dɛm fɔ DBA kin difrɛn frɔm wan pɔrsin to ɔda pɔrsin. Sɔm pipul kin gɛt sɔm kayn sik wae nɔr kin pasmak, wae ɔda pipul dɛn kin gɛt mɔr siriɔs sik. Lɛ wi tek wan luk pan di men sayn dɛm.
| Di sayn we de sho se di sik de | Wan simpul ɛksplen |
|---|---|
| Fɔ taya ɔltɛm | Bikɔs di bɔdi in sɛl dɛn nɔ de gɛt di ɔksijɛn we yu nid, bɔku tɛm yu kin fil lɛk se yu de slip ɛn yu nɔ gɛt trɛnk fɔ du ɛnitin. |
| Paleness na di skin (Pallor) . | di skin, di lip dεm, εn di nel dεm kin tan lεk bכku bכku bכku wan biכs di rεd bכdi sεl dεm we de mek di blכd kכla rεd kכla. |
| At bit kwik kwik wan (Tachycardia) . | Di at gɛt fɔ wok tranga wan fɔ pɔmp di blɔd fast fast ɛn gi di bɔdi di ɔksijɛn we i nid. |
| I nɔ kin izi fɔ yu fɔ blo | Sɔntɛnde, lɛk we a de waka fɔ shɔt tɛm ɔ we a de klaym stej, i nɔ kin izi fɔ mi fɔ blo, ɛn a kin fil lɛk se a de blo. |
| Fil fɔ it | Ɛspɛshali yɔŋ pikin dɛn we nɔ rili lɛk fɔ it. |
| Ed we de at ɛn wikɛd | Wan kɔmɔn sik wae kin kam wae pɔrsin nɔr gɛt bɛtɛ ɔksijɛn na di bɔdi ɛn di bren. |
Wetin mek dis kayn sik kin apin? Wetin na di kɔz?
As wi bin dɔn tɔk, dis na sik we pɔsin kin gɛt we i kam pan jɛnɛtiks. Sɔm patikyula jin dɛn de na wi bɔdi we de tɛl wi fɔ mek rɛd blɔd sɛl dɛn. dεn kכl dεm `(ribosomal protin jin dεm)`. Pɔsin we gɛt DBA gɛt difrɛns ɔ muteshon na dɛn jin ya. Dis kin mek di we aw dɛn kin mek rɛd blɔd sɛl dɛn nɔ kin apin fayn fayn wan.
Di impɔtant tin na dat, i kin pas frɔm mama ɛn papa to pikin dɛn. Bɔt dis kin apin nɔmɔ pan smɔl pasɛnt, lɛk 10% - 25%. Bɔku tɛm, pikin kin gɛt dis sik ivin if nɔbɔdi nɔ de na di famili we gɛt di sik, bikɔs ɔf wan random jenɛtik mutation.
Us ɔda kɔmplikɛshɔn dɛn kin apin bikɔs ɔf DBA?
DBA nɔ jɔs de afɛkt di rɛd blɔd sɛl dɛn. Sɔntɛnde, i kin kam wit ɔda wɛlbɔdi prɔblɛm dɛn bak. Dɔn bak, pipul dɛm wae gɛt DBA kin gɛt sɔm kayn kansa smɔl pas di jenɛral pipul dɛm.
| Tayp ɔf kɔmplikeshɔn | Tɔk bɔt |
|---|---|
| Kɔmplikɛshɔn dɛn we kin apin | |
| Di tin dɛn we dɛn bɔn we dɛn bɔn | Sɔm prɔblɛm kin de wit di at, kidni, ɔr an ɛn fut. |
| Di gro we dɛn de gro de stɔp | di fyzikal growth de slo pas aw dεn bin de εkspεkt fכ di ej. |
| Ayɔn ɔvalod | If pɔsin gi blɔd ɔltɛm, i kin mek di ayɔn we de na di bɔdi go ɔp we i nɔ nid, ɛn dis kin pwɛl di ɔgan dɛn lɛk di at ɛn di liva. |
| Di ɔda blɔd sɛl dɛn kin go dɔŋ | Sɔntɛnde ɔda blɔd sɛl dɛn lɛk wayt blɔd sɛl (nyutropenia) ɔ pletlɛt (thrombocytopenia) kin smɔl bak. |
| Risk fɔ gɛt kansa (i kin pas smɔl) . | |
| Lukimiya | εspεshali wan kayn bכdi kεnsar we dεn kכl ``Acute myeloid leukemia - AML``. |
| Maylodisplastik sindrom (MDS) we gɛt di sik. | Wan ɔda blɔd sik we de mek di bon mɛrɔ nɔ wok fayn. |
| Osteosarkoma we gɛt di sik | Wan kansa sik we kin apin na di bon dɛm. |
Aw dɔktɔ dɛn kin no dis sik kɔrɛkt wan?
If yu pikin gɛt dɛn sik ya, yu dɔktɔ go tek tɛm luk yu pikin fɔs ɛn aks yu bɔt di ditil dɛm. Dɔn, dɛn kin du sɔm tɛst fɔ no if pɔsin gɛt di sik.
- Complete Blood Count (CBC): Dis de sho di nɔmba fɔ di rɛd blɔd sɛl dɛn, di wayt blɔd sɛl dɛn, ɛn di pletlɛt dɛn we de na di blɔd. Pɔsin we gɛt DBA gɛt rili lɔw rɛd blɔd sɛl.
- rεtikulכsayt kכnt: rεtikulכsayt dεm na nyu rεd bכdi sεl dεm we dεn nכ fכm we dεn nכ machכ ful wan yet. If di nɔmba smɔl, dat min se di bon mɛro nɔ de mek inof nyu rɛd blɔd sɛl dɛn.
- Bon mכro aspirashכn εn bayopsi: Dis na di men tεst we dεn kin yus fכ kכnfכm di sik. insay dis, dεn kin tek wan rili sכmכl sεmpl fכ bon mכro, we kin kכmכt frכm di hip bon, כnda anεsthεsia. Dɔn dɛn kin chɛk am ɔnda maykroskɔp fɔ no ɔmɔs rɛd blɔd sɛl dɛn de mek.
Wetin na di tritmɛnt dɛm fɔ DBA?
Pan ɔl we dɛn nɔ kin ebul fɔ mɛn DBA ɔltogɛda, fayn tritmɛnt dɛn de we kin ɛp fɔ kɔntrol di sik dɛn ɛn fɔ mek pɔsin gɛt gud kwaliti layf.
1. Kɔtikosterɔyd: Dɛn mɛrɛsin ya de mek di bon mɛro mek mɔ rɛd blɔd sɛl dɛn. Dis tritmɛnt kin wok fayn fɔ bɔku sik pipul dɛn.
2. Blɔd transfyushɔn: Dɛn kin gi pipul dɛn we nɔ gɛt bɛtɛ blɔd rɛd blɔd sɛl frɔm pɔsin we gɛt wɛlbɔdi. Dɔktɔ dɛn kin bigin dis tritmɛnt jɔs afta dɛn dɔn no se i gɛt di sik. Dis kin mek yu fil fri kwik kwik wan frɔm di sayn dɛm.
3. Stem sel transplant: Dis na di onli tritmεnt we kin kכmplit kכl DBA. Bɔt dis na tritmɛnt we rili kɔmpleks ɛn we gɛt prɔblɛm. insay dis, dεn kin transplant stεm sεl dεm frכm di bon mכro fכ hεlty pכsin (bכku tεm na in famili mεmba) insay di sikman. Dis nɔ pɔsibul fɔ ɔlman. Di dɔktɔ kin stɔdi di sikman in kɔndishɔn gud gud wan, i kin fɛn di bɛst we fɔ du am, ɛn i kin disayd fɔ du dis afta we i dɔn tink bɔt am bɔku tɛm.
Wetin fɔ du we ɛnitin apin we nɔ izi fɔ du?
If yu ɔ yu pikin gɛt DBA, i rili impɔtant fɔ de tɔk to yu dɔktɔ. I impɔtant fɔ kip di apɔntinmɛnt ɛn tek yu mɛrɛsin dɛn lɛk aw dɛn tɛl yu fɔ tek. If yu sik de wɔs (fɔ ɛgzampul, yu taya pas aw yu kin gɛt, yu kin gɛt mɔ infɛkshɔn), tɛl yu dɔktɔ wantɛm wantɛm.
Dɔn bak, if yu gɛt ɛni wan pan dɛn imejensi sayn ya, go na di ɔspitul Imejɛnsi Dipatmɛnt (ETU) we de nia yu wantɛm wantɛm .
- Bɔrku pen na yu chɛst
- Wan bad bad bɛlɛ pen wantɛm wantɛm
- Wantɛm, yu ed kin at bad bad wan, yu kin kɔnfyus, ɔ yu nɔ kin ebul fɔ tɔk (dɛn tin ya kin bi sayn fɔ se yu dɔn gɛt strok) .
- Blɔd we pɔsin nɔ ebul fɔ kɔntrol
Fɔ liv wit wan sik wae de kam wit yu layf ɔl ɛn nɔr kin bɔrku lɛk DBA, mɔr lɛk if na yu pikin, kin rili tranga. I kin mek pɔsin fil lɛk se na in wangren de. Bɔt mɛmba se nɔto yu wangren de. Yu dɔktɔ ɛn di mɛdikal tim go gi yu di sɔpɔt ɛn gayd we yu nid.
Mɛsej we dɛn kin kɛr go na os
- Daymɔnd-Blakfan anemia (DBA) na wan sik we nɔ kin apin so ɔltɛm we kin mek di bon mɛrɔ nɔ mek inof rɛd blɔd sɛl.
- Wae yu taya ɔltɛm, yu nɔr de fil fayn, ɛn yu nɔr de blo fayn na di men sayn dɛm.
- Pan ɔl we dis na sik we pɔsin kin gɛt fɔ ɔl in layf, dɛn kin ebul fɔ mɛn am fayn fayn wan wit tritmɛnt dɛn lɛk sterɔyd mɛrɛsin ɛn blɔd transfyushɔn.
- I impɔtant fɔ de tɔk to yu dɔktɔ ɔltɛm ɛn gɛt di rayt tɛst ɛn tritmɛnt.
- Yu fɔ no bɔt di sayn dɛn we de wɔn yu we yu gɛt imejensi (lɛk we yu de fil bad bad wan na yu chɛst, we yu nɔ de no natin) ɛn go na di ɔspitul in Imejɛnsi Tritmɛnt Yunit (ETU) wantɛm wantɛm if dis kayn tin apin.
- Ivin if yu fil se yu nɔ de nia ɔda pipul dɛn bikɔs dis na sik we nɔ kin apin so ɔltɛm, mɛmba se mɛdikal tim ɛn sɔpɔt nɛtwɔk dɛn de fɔ sɔpɔt yu.
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