Yu dɔn ɛva notis se yu pikin kin taya ɔltɛm ɛn i kin rili blak? Sɔntɛnde wi kin tink se na so i kin bi wit yɔŋ pikin dɛn, bɔt sɔntɛm rizin de biɛn am we wi nɔ no. Tide wi go tɔk bɔt dis kayn tin we nɔ kin apin so ɔltɛm, bɔt we rili impɔtant fɔ no blɔd kɔndishɔn. Dɛn kɔl dis Daymɔnd-Blakfan Anemia (DBA).
Fɔ tɔk am simpul wan, wetin na Daymɔnd-Blakfan Anemia (DBA)?
Dis na blɔd sik we nɔ kin apin so ɔltɛm. Fɔ tɔk am simpul wan, wetin kin apin na dat wi bon mɛro nɔ kin ebul fɔ mek inof rɛd blɔd sɛl. Yu no, na dɛn rɛd blɔd sɛl ya de kɛr ɔksijɛn go ɔlsay na wi bɔdi. So we dɛn nɔ go du, i kin rili afɛkt di we aw di bɔdi de wok.
DBA na wan sik we de mek pɔsin gɛt jɛnɛtiks . Dis min se di kכndyushכn de kכz fכ chenj na di jin dεm. Dɛn chenj ya we de apin na di jɛnɛtiks de sho aw di sik dɛn kin rili bad. I kin afɛkt lɛk wan pan ɛvri 500,000 pikin dɛn ɔlsay na di wɔl. Pan ɔl we na sik we pɔsin kin gɛt fɔ ɔl in layf, if dɛn tek di rayt tritmɛnt, dɛn kin kɔntrol di sik dɛn ɛn liv gud layf .
Wetin na di sayn dɛm fɔ dis sik?
Klose to ɔlman wae gɛt DBA gɛt anemia. Dat min se blɔd nɔ de. De sayn dɛm kin rili smɔl fɔ sɔm, ɛn kin rili bad fɔ ɔda pipul dɛm. Lɛ wi tek wan luk pan de men sayn dɛm wae yu kin si.
| Di sayn we de sho se di sik de | Wan simpul ɛksplen |
|---|---|
| Taya | Bikɔs di bɔdi nɔ de gɛt di ɔksijɛn we i nid, bɔku tɛm yu kin fil lɛk se yu de slip ɛn yu taya pasmak fɔ du ɛnitin. |
| Paleness na di skin (Pallor) . | Mɔ di say dɛn we di an, di lip dɛn, ɛn di say dɛn we de ɔnda di yay, kin tan lɛk se dɛn nɔ gɛt wan bɔt. Dis kin bi bikɔs di rɛd blɔd sɛl dɛn nɔ de, we kin mek di blɔd in rɛd kɔlɔ nɔ bɔku. |
| At bit kwik kwik wan (Tachycardia) . | we di bכdi in tisu dεm nכ gεt inof כksijεn, di at gεt fכ wok tranga wan fכ mek di כksijεn we nכ de. Dis kin mek di at kin bit kwik kwik wan. |
| I nɔ kin izi fɔ yu fɔ blo | Sɔntɛnde, i kin at fɔ blo, lɛk we yu de waka fɔ shɔt tɛm ɔ we yu de klaym stej. |
| I nɔ kin want fɔ it igen ɛn i kin wik | Yu kin notis bak se yu nɔ kin want fɔ it ɛn yu kin wik. |
| Ɛd we de at ɛn di an ɛn fut dɛn we de swel | Sɔm pipul dɛn kin gɛt sɔm sayn dɛn bak lɛk ed we de at ɛn dɛn an ɛn fut dɛn kin swel. |
Wetin mek dis de apin?
Imajin se wan buk de we de gi instrɔkshɔn fɔ ɔltin na wi bɔdi, we dɛn kɔl wi jin. wan kayn jin de we de gi instrכkshכn fכ mek rεd bכdi sεl dεm we dεn kכl ``ribosomal protein genes.`` DBA de apin we vεryushכn de insay dεn jin dεm. Dɔn di we aw dɛn kin mek rɛd blɔd sɛl dɛn nɔ kin apin fayn fayn wan.
Bitwin 10% ɛn 25% pan pipul dɛm wae gɛt DBA kin gɛt am frɔm dɛn mama ɛn papa. Bɔt bɔku tɛm, na nyu sik we nɔbɔdi nɔ bin dɔn gɛt na di famili bifo .
Dis kin mek ɔda prɔblɛm dɛn apin?
Yɛs, DBA kin gɛt sɔm ɔda wɛlbɔdi prɔblɛm dɛn.
Di impɔtant tin na dat nɔto ɔl dɛn tin ya kin apin to ɔlman. Bɔt i rili impɔtant fɔ no bɔt dis ɛn kɔntinyu fɔ tɔk to yu dɔktɔ.
| Sɔm prɔblɛm dɛn we kin apin | Wetin dat min? |
|---|---|
| Di tin dɛn we dɛn bɔn we dɛn bɔn | I kin bi se dɛn bɔn am wit sɔm prɔblɛm dɛn na in at, in kidni, ɔ in an ɛn fut. |
| Di gro we dɛn de gro de stɔp | di pikin in divεlכpmεnt kin delay fכ dεn ej. |
| Ayɔn ɔvalod | If pɔsin kin gi blɔd ɔltɛm, dat kin mek di ayɔn we de na di bɔdi go ɔp we i nɔ nid fɔ du am. |
| Di ɔda blɔd sɛl dɛn kin go dɔŋ | kכndishכn dεm lεk we di nyutrofil dεm de dכn, wan kayn wayt bכdi sεl, (Neutropenia), di pletlet dεm we de dכn (Thrombocytopenia), כ כl di kayn sεl dεm na di bכdi we de dכn (Pancytopenia) kin apin. |
| Lɛ wi no bak bɔt di risk fɔ gɛt kansa. | |
Pipul wae gɛt DBA kin gɛt sɔm kayn kansa smɔl pas di jenɛral pipul dɛm. Dɛn tin ya na:
| |
Aw dɔktɔ dɛn kin fɛn dis?
If yu dɔktɔ saspek dis sik, dɛn go du sɔm tɛst fɔ no if i gɛt am.
- Kɔmplit Blɔd Kɔnt (CBC): Dis kin chɛk di nɔmba fɔ di rɛd blɔd sɛl dɛn, wayt blɔd sɛl dɛn, di pletlɛt dɛn, ɛn di ɛmoglobin (ɛmoglobin) we de na di blɔd. Insay DBA, di rɛd blɔd sɛl ɛn di ɛmoglobin lɛvɛl kin rili smɔl.
- rεtikulכsayt kכnt: rεtikulכsayt dεm na nyu rεd bכdi sεl dεm we dεn fכm, we nכ machכ. If nכmba fכ dεn tin ya sכmtεm, dat min se prכblεm de wit di bon mכro we de mek rεd bכdi sεl dεm.
- Bone Marrow Aspiration and Biopsy: Dis na fɔ tek smɔl smɔl bon mɛrɔ ɛn chɛk am ɔnda maykroskɔp. Dis kin ɛp fɔ no if di rɛd blɔd sɛl dɛn we dɛn de mek dɔn go dɔŋ.
Wetin na di tritmɛnt dɛn?
Bɔku tritmɛnt opshɔn dɛn de fɔ DBA. Di dɔktɔ go disayd di tritmɛnt we fit pas ɔl bay di sik we di pɔsin gɛt.
1. Kɔtikosterɔyd: Dɛn mɛrɛsin ya na stɛroyd-tayp mɛrɛsin. Dɛn mɛrɛsin ya kin mek di bon mɛro wok ɛn mek di rɛd blɔd sɛl dɛn bɔku. Dɛn kin si di rizɔlt insay tu to 4 wiks.
2. Blɔd Transfyushɔn: Fɔ tɔk am simpul wan, blɔd transfyushɔn. If yu gi di pɔsin rɛd blɔd sɛl frɔm di wan dɛn we gi am, dat kin mek di bɔdi gɛt rɛd blɔd sɛl dɛn bak kwik kwik wan. Dis na tritmɛnt we dɛn kin bigin jɔs afta dɛn dɔn no di sik.
3. Stem Cell Transplant: Dis na di onli we fɔ mɛn dis sik kpatakpata . Bɔt dis na sɔm kayn tritmɛnt we kɔmpleks, i kin gɛt prɔblɛm, ɛn i kin mek pɔsin in layf de pan denja. So, dɔktɔ dɛn kin tink bɔt ɛni wan pan di sikman dɛn wan bay wan ɛn dɛn kin jɔs yuz dis tritmɛnt if nid de.
Wetin go apin tumara bambay? Wetin wi go se bɔt di layf we pɔsin kin liv?
If dɛn gɛt di rayt tritmɛnt ɛn dɛn de kia fɔ di wan dɛn we gɛt DBA ɔltɛm, dɛn kin liv gud layf. Bɔt dis na sik we pɔsin fɔ kia fɔ ɔl in layf. Afta i dɔn ol 25 ia, di risk fɔ gɛt siriɔs prɔblɛm kin go ɔp smɔl.
As fɔ di layf we pɔsin kin liv, i kin difrɛn frɔm wan pɔsin to ɔda pɔsin. I dipen pan aw di sik kin tranga ɛn aw i kin biev to di tritmɛnt. Stɔdi dɔn sho se wit tritmɛnt, lɛk 75% pan di sik pipul dɛn kin liv te dɛn ol 50 ia . Bɔt bikɔs dis na sik we nɔ kin bɔku, di data nɔ bɔku. Na yu dɔktɔ nɔmɔ go ebul fɔ gi yu di kɔrɛkt tin bɔt yu sik.
Ustɛm a fɔ go to dɔktɔ?
If yu ɔ yu pikin gɛt DBA, i impɔtant fɔ de kɔntakt yu dɔktɔ ɔltɛm. Nɔ ɛva mis di klinik apɔntinmɛnt dɛn we yu dɔn plan fɔ du.
Dɔn bak, if yu fil se yu sik de wɔs, fɔ ɛgzampul, if yu taya wantɛm wantɛm ɔ if yu gɛt infekshɔn ɔltɛm , tɛl yu dɔktɔ wantɛm wantɛm.
Wetin fɔ du we ɛnitin apin we nɔ izi fɔ du?
If ɛni wan pan dɛn sayn ya apin, go na di ɔspitul Imejɛnsi Dipatmɛnt (ETU) we de nia yu wantɛm wantɛm.
- Chɛst de pen
- Bɛlɛ pen bad bad wan
- Ed kin at bad bad wan wantɛm wantɛm ɔ yu nɔ kin no natin (i kin bi sayn fɔ strok) .
- Blɔd we pɔsin nɔ ebul fɔ kɔntrol
Fɔ liv wit layf-lɔng kɔndishɔn lɛk DBA, wae bɔrku pipul nɔr ɛva yɛri bɔt, nɔr izi. I kin tranga yu pikin mɔ we i afɛkt yu pikin. Sɔntɛm yu go fil se na yu wangren de. Bɔt mɛmba se nɔto yu wangren de. Yu dɔktɔ ɛn di mɛdikal tim go gi yu di sɔpɔt, advays, ɛn tritmɛnt plan 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 afɛkt di we aw dɛn de mek rɛd blɔd sɛl dɛn na di bon mɛro.
- Di men sayn dɛm na fɔ pale bikɔs ɔf anemia, taya ɔltɛm, ɛn i nɔ kin izi fɔ blo.
- Dɛn kin kɔntrol di sik dɛn fayn fayn wan wit stɛroyd mɛrɛsin ɛn blɔd transfyushɔn. Pan ɔl we dɛn kin transplant stem sɛl fɔ mek i wɛl ɔl, na tritmɛnt we gɛt prɔblɛm.
- Bikɔs dis na sik we pɔsin kin gɛt fɔ ɔl in layf, i rili impɔtant fɔ mek dɛn de wach am ɔltɛm na dɔktɔ ɛn gɛt di rayt tritmɛnt.
- If yu ɔ yu pikin gɛt sɔm sayn ɔr kwɛstyɔn bɔt dis sik, nɔr ɛva shem fɔ tɔk to yu dɔktɔ.
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