Imajin yu smɔl pikin in skin gɛt blista ɛn i izi fɔ wund bikɔs ɔf di klos we i wɛr, ilɛksɛf i skrach smɔl sɔnsay. Dis na tin we rili pen ɛn sɔri fɔ yɛri, nɔto so? Bɔt i sɔri fɔ no se sɔm pikin ɛn big pipul dɛn kin gɛt dis kayn tin. Tide wi go tɔk bɔt wan sik we dɛn kɔl ‘Epidermolysis Bullosa’ (EB), we kin mek dis kayn skin rili dilik ɛn sɛnsitiv. Sɔm pipul dɛn kin kɔl dɛn pikin ya bak wit lɔv "bɔtaflay bebi" bikɔs dɛn skin kin dilik lɛk bɔtaflay in wing.
Fɔ tɔk am simpul wan, wetin na Epidermolysis Bullosa (EB)?
Epidermolysis Bullosa (EB) nɔto wan sik. Na wan jenɛtik kɔndishɔn, we min se dɛn kin pas am frɔm jɛnɛreshɔn dɛn. Pɔsin we gɛt dis sik in skin kin rili brok. Ivin smɔl prɛshɔn ɔ frikshɔn we nɔ go ambɔg nɔmal pɔsin, lɛk fɔ rɔb pan klos ɔ pɔsin we tɔch dɛn skin, sɔntɛnde kin mek i gɛt blista ɛn wund.
Wi skin gɛt bɔku men layers. di protin dεm de ol dεn layεr dεm ya tכgeda. Fɔ tɔk di kɔrɛkt tin, wan prɔtin we dɛn kɔl kolagen rili impɔtant fɔ dis. I tan lεk ‘gכm’ we de stik pan di layεr dεm na di skin. biכs fכ wan jεnεtik dεfεkt na pipul dεm we gεt EB sik, dis protin nכ de prodyuz fayn fayn wan. So, biכs dat ‘gכm’ wik, di layεr dεm na di skin izi fכ separet, fכ ful dεm wit wata εn fכm blista. Dɛn blista ya nɔ kin jɔs kam na say dɛn lɛk di an, fut, ɛlb, ɛn ni, bɔt i kin kam bak insay di mɔt, trot, ɛn insay di bɔdi.
Wetin na di men kayn EB sik?
EB dεn sheb to fכ men tכp dεm, i dipכnt pan di layεr fכ di skin usay di blista dεm de fכm. Dis rili impɔtant fɔ mek dɔktɔ dɛn disayd aw fɔ trit am.
| EB Tayp | Di layt we de afɛkt di skin | Wan simpul diskripshɔn |
|---|---|---|
| E. B. Simpleks (EBS) we de na di . | Di layt we de ɔp na di skin (epidamis) . | Dis na di kayn we we pipul dɛn kin gɛt mɔ. Bɔku tɛm, i nɔ kin rili bad. We di blista dɛn dɔn wɛl, na smɔl skata nɔmɔ de de. |
| Jɔnkshɔn EB (JEB) . | Usay tu layers na di skin kin mit | Dis na tin we nɔ kin apin smɔl. Blista kin fɔm insay di mɔt ɛn di say dɛn we di briz de blo. I kin kɔmɔt frɔm mɔdaret to siriɔs. |
| Distrofik EB (DEB) we gɛt di sik. | di layt we de dכn di skin (dermis) . | Insay dis kayn, di blista dɛn kin lɛf skata as dɛn de wɛl. Tin dɛn kin de bak lɛk di finga dɛn we de stik togɛda. |
| Kindler Sindrom we gɛt di sik | Insay ɛni layt na di skin | Dis na wan kayn we we nɔ kin apin so ɔltɛm. Blista kin fɔm pan difrɛn layers na di skin. |
Wetin na di poshubul simptom dɛm fɔ EB sik?
Di sayn dɛm kin difrɛn difrɛn wan fɔ di kayn EB sik. Bɔrku tɛm, di sayn dɛm kin bigin fɔ sho we dɛn smɔl.
- Di men sayn na di skin we de blist, mɔ na di an, fut, ɛlb, ɛn ni.
- Di skin we de tik na di an ɛn di fut, lɛk se dɛn de swɛt am.
- Di nel dɛn we de pwɛl, tik, ɔ we de kɔmɔt.
- di apinεns fכ sכm sכm wayt blista lεk bכmp dεm (milia) na di skin.
- I nɔ izi fɔ swɛla it (dysphagia) bikɔs ɔf blista na di mɔt ɛn trot.
- If pɔsin wund bɔku tɛm, i kin mek i nɔ gɛt blɔd kɔmɔt na di bɔdi, ɛn dis kin mek i nɔ gɛt bɛtɛ blɔd .
- If i siriɔs, di finga dɛn kin stik togɛda.
- di tut inεmεl de wik εn di tit dεm nכ de divεlכp (hypoplasia).
- Stunted growth in pikin dɛm.
Di tin we impɔtant pas ɔl na dat dis sik nɔ kin pas pɔsin . I nɔ de pas frɔm wan pɔsin to ɔda pɔsin, nɔto tru tɔch ɔ ɛni ɔda we. Dis na wan sik we pɔsin kin gɛt we i kam pan jɛnɛtiks.
Aw dɛn kin no ɛn trit dis sik?
If yu pikin gɛt dɛn sik ya, i impɔtant fɔ go to dɔktɔ. Bɔku tɛm, dɔktɔ go du bɔku tɛst fɔ no if i gɛt dis sik.
- Skin Biopsy: Dis na fɔ tek wan rili smɔl pat pan di skin ɛn chɛk am ɔnda maykroskɔp. Dis kin ɛp fɔ no ustɛm di skin gɛt di sik.
- Tɛst fɔ di Jɛnɛtiks:Dis kin ɛp fɔ no ustɛm di jin nɔ fayn ɛn us kayn EB i bi.
Lɛ wi tɔk bɔt tritmɛnt.
Di fɔs tin fɔ se na dat, i sɔri fɔ no se, no mɛrɛsin nɔ de fɔ EB yet. Bɔt dɛn kin kɔntrol di sayn dɛm, dɛn kin avɔyd di prɔblɛm dɛm, ɛn di pɔsin kin liv fayn layf as i pɔsibul. Di men gol dɛm fɔ tritmɛnt na:
- Minimiz blista as mɔ as yu ebul.
- Fɔ tek tɛm fɔ mek blista ɛn wund nɔ gɛt di sik.
- Fɔ kɔntrol di pen.
- Fɔ mek yu nɔ gɛt prɔblɛm wit yu it.
Dis na sɔm pan de advays dɛm wae dɔktɔ dɛn kin gi fɔ dis.
- Wear klos we saf ɛn lɔs : Yu fɔ wɛr klos we dɛn mek wit natura fayv lɛk kɔtɔn, we nɔ tayt, ɛn we nɔ de rɔb pan yu bɔdi.
- Kip yu skin kol: We yu wam ɛn swet, dat kin mek yu gɛt bɔku bɔku blista dɛn, so i impɔtant fɔ mek di rum gɛt fayn tɛmpracha.
- Yuz spɛshal bandej: Dɛn fɔ yuz spɛshal bandej ɛn goz we nɔ de stik na di skin fɔ wund.
- Kia fɔ di wund dɛn ɛvride: Put ɔnt we di dɔktɔ tɛl yu fɔ du ɛn kip di wund dɛn klin.
- Di it: If yu gɛt ɔlsa na yu mɔt, yu fɔ avɔyd it dɛn we wam, we gɛt spays, ɛn we at ɛn it tin dɛn we saf lɛk sup, mash it, ɛn pudding.
- Ɔpreshɔn: Sɔntɛnde, i kin nid fɔ du ɔpreshɔn fɔ mek di εsophagus big if i smɔl ɔ fɔ separet di finga dɛn if dɛn stɔp togɛda.
Advays fɔ mama ɛn papa dɛn we de kia fɔ pikin we gɛt EB
Fɔ kia fɔ pikin lɛk dis na big prɔblɛm fɔ mama ɛn papa dɛn. I kin mek yu taya na yu bɔdi ɛn yu maynd. Bɔt di lɔv we yu gɛt ɛn di kia we yu de kia fɔ di pikin na big trɛnk fɔ di pikin.
- Wash yu an fayn fayn wan ɔltɛm bifo yu tɔch yu pikin in skin.
- We yu de es di pikin, nɔ ol am ɔnda in an . If yu du dat, dat kin pwɛl di skin. Put yu an dεm כnda di pikin in bak εn in tכŋ dεm εn tek tεm es am.
- If yu de yuz dayapɛt, yuz di wan dɛn we gɛt Vɛlkro instead ɔf adeziv tep. Yu kin ridyus frikshɔn bay we yu kɔt di ɛlastik band dɛn we de rawnd di leg dɛn.
- We yu de was yu pikin, i go fayn fɔ klin ɛni pat na di bɔdi saful wan pas fɔ put am insay wata.
- Nɔ stɔp yu pikin fɔ du tin dɛn. Pan ɔl we i nɔ fayn fɔ ple rɔf, ɛksesaiz saful wan lɛk fɔ swim kin ɛp fɔ mek yu pikin in mɔsul dɛn strɔng.
- If yusɛf de fil se yu maynd dɔn taya, nɔ shem fɔ aks yu dɔktɔ, yu fambul, ɔ yu mama ɛn papa we dɔn gɛt dis kayn tin fɔ sɔpɔt yu.
Ustɛm yu fɔ go to dɔktɔ wantɛm wantɛm?
We yu de manej EB, sɔntɛnde i kin impɔtant fɔ go to dɔktɔ wantɛm wantɛm. Yu fɔ de wach fɔ di sik dɛn we de kam biɛn ya.
- If yu gɛt prɔblɛm fɔ blo. (We dɛn kayn tin ya apin , go wantɛm wantɛm na di Imejɛnsi Dipatmɛnt (ETU) na di ɔspitul we de nia yu. )
- If yu nɔ ebul fɔ swɛla it ɔ wata.
- If di wund luk lɛk se i gɛt di sik (we min se di say we de rawnd di wund dɔn rɛd, i dɔn swel, i fil wam, ɔ i gɛt pus we de kɔmɔt).
- If di pikin gɛt fiva.
- If nyu sayn de sho wae yu nɔr kin ɔndastand.
Pan ɔl we fɔ liv wit dis sik kin tranga, if yu gi yu di rayt advays ɛn kia fɔ yu, yu go ebul fɔ kɔntrol di pen ɛn liv fayn layf. De tin wae impɔtant pas ɔl na fɔ woke klos wit yu dɔktɔ ɔltɛm ɛn nɔr tray fɔ dil wit dɛn tin ya yu wan.
Mɛsej we dɛn kin kɛr go na os
- Epidermolysis Bullosa (EB) na wan jεnεtik kכndyushכn we dεn kin gεt εn i kin mek di skin bכku bכku wan. I nɔ kin pas pɔsin.
- Pan ɔl we nɔr kɔmplit mɛrɛsin nɔr de fɔ dis, yu kin liv wit am bay wae yu de kɔntrol di sayn dɛm ɛn mek yu nɔr gɛt prɔblɛm.
- Speshal kia fɔ di skin rili impɔtant fɔ mek yu nɔ gɛt blista ɛn wund. Sɔft klos, fɔ mek di skin kol, ɛn fɔ fala di we dɛn fɔ kia fɔ di skin we nɔ de pwɛl di skin.
- I impɔtant fɔ no bɔt tin dɛn lɛk we i nɔ izi fɔ swɛla, infekshɔn, ɛn pen ɛn fɔ go to dɔktɔ wantɛm wantɛm if dɛn kayn tin ya apin.
- Dis na waka we nɔ izi fɔ di pɔsin we sik ɛn di famili. I impɔtant fɔ aks fɔ sɔpɔt frɔm dɔktɔ ɛn ɔda sɔpɔt grup dɛn.
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