Yu dɔn ɛva yɛri bɔt Rapp-Hodgkin syndrome ɔ AEC syndrome? Sɔntɛm nɔto so. Dis na tin wae nɔr kin bɔrku, dat min se bɔrku pipul nɔr kin gɛt dɛn. Na di tin dɛn we de mek pɔsin gɛt dɛn jɛnɛtiks de mek dɛn . Fɔ tɔk am simpul wan, naw dɛn kin tek dɛn tu tin ya se dɛn rili fiba, ɛn dɛn de pan di sem grup fɔ sik dɛn. Dɛn tin ya kin afɛkt yu ia, yu nel, yu skin, yu swet gland , ɛn yu tit. So lɛ wi tɔk bɔt dɛn smɔl mɔ, rili simpul wan.
Wetin mek dis tin kin apin?
Okay, lɛ wi fɔs luk wetin de mek dis apin. Ɛni sɛl na wi bɔdi gɛt sɔntin we dɛn kɔl jin. Wi kin gɛt dɛn tin ya frɔm wi mama ɛn papa. Fɔ tɔk di kɔrɛkt tin, wi gɛt tu kɔpi fɔ ɛni jin, wan na wi mama ɛn wan na wi papa.
AEC sεndrכm de kכz fכ wan difεkt na wan pan wi jin dεm, spεshal wan di TP63 jin . if wan pan di tu kכpi dεm fכ di TP63 jin gεt dis dεfekt, di pכsin kin gεt AEC sεndrכm.
Sɔntɛnde, dis sik kin kɔmɔt frɔm mama ɛn papa to pikin dɛn. dis min se mama εn papa we gεt dis jεnεtik difεkt gεt lεk 50% chans fכ pas di kכndyushכn to dεn pikin. Bɔt bɔku tɛm, na random kɔndishɔn, we min se i kin apin we dɛn bɔn am ɛn nɔ gɛt ɛni famili histri. So nid nɔ de fɔ wɔri bɔt dis.
Wetin na di sayn dɛm fɔ dis sik?
Dis na di tin we impɔtant pas ɔl. Di sayn dɛm fɔ AEC syndrome kin difrɛn frɔm wan pɔrsin to ɔda pɔrsin. Ivin if pipul dɛm na di sem famili gɛt dis sik, de sayn dɛm wae dɛn kin sho kin difrɛn. So nɔto ɔlman go gɛt di sem kayn sik.
Lɛ wi luk sɔm pan de men sayn dɛm wae wi kin si in jɛnɛral.
| Di sayn we de sho se di sik de | Simpul Ɛksplen |
|---|---|
| Kleft lip ɛn palata | Di lip we de ɔp nɔ ful-ɔp, ɛn wan skel de insay. I kin bi bak se skel de na di ɔpa palata na di mɔt. |
| Di swet we de go dɔŋ | Di bɔdi kin gɛt smɔl ɔ nɔ gɛt swet gland dɛn. Dis kin mek di swet nɔ bɔku. Dis kin mek i izi fɔ lɛ di bɔdi wam pasmak ɛn fil wam. |
| Fused aylid dɛn | Di aylid dɛn kin stɔp togɛda, sɔm pat ɔ dɛn kin lɔk ɔl. Prɔblɛm kin de bak wit di wata dakt dɛm, we kin mek yu gɛt tin dɛm lɛk dray yay ɛn pink yay. |
| Prɔblɛm dɛn we kin apin we pɔsin de gro | Di pikin kin gɛt prɔblɛm wit di we aw i de gro ɛn we i de gɛt bɔku bɔku wet. |
| I nɔ de yɛri fayn igen | Dis kin mek di pikin de te fɔ lan fɔ tɔk. |
| Di chenj dɛn we de apin na di nel dɛn | Nɛl kin mis ɔ gɛt shep we nɔ kɔmɔn. |
| Skin we de rɔtin | Na sɔm say dɛn, di layt we de ɔp di skin de kɔmɔt. Dis kin mek pikin dɛn we dɛn jɔs bɔn, day pan denja. So, wi fɔ tek tɛm wit dis. |
| Prɔblɛm dɛn we gɛt fɔ du wit dɛn tit | Sɔm tit dɛn kin nɔ de, big big gap kin de bitwin di tit dɛn, tit dɛn we tan lɛk kɔn kin apia, ɛn di ɔda tin we kin kɔba di tit dɛn we dɛn kɔl ɛnamel kin tan. |
| Prɔblɛm dɛn we gɛt fɔ du wit di ia | I kin bi se na smɔl ia nɔmɔ de na di ed ɛn in fes, ɛn di ia we de de kin dray ɛn brok. |
| Prɔblɛm dɛn we gɛt fɔ du wit di urinary tract na bɔy pikin dɛn | di opin fכ di urethra kin de na di כndasayd fכ di penis insted fכ di nכmal say we i de. |
Aw fɔ no di sik?
Bɔrku tɛm, yu dɔktɔ kin no dis sik bay wae yu de si yu sik, yu mɛdikal histri , ɛn wae yu dɔn chɛk yu bɔdi. We dɛn simptom ya kam togɛda, dɛn kin sɔprayz se AEC syndrome.
apat frכm dat, dεn kin du jεnεtik tεst fכ chεk fכ di TP63 jin . Bɔt dɛn nɔ go ebul fɔ du dis tɛst na ɛvri lab na Sri Lanka. Na sɔm spɛshal tɛst.
Mama ɛn papa dɛn we de pan denja fɔ dis sik kin gɛt di chans fɔ mek dɛn tɛst dɛn pikin bifo dɛn bɔn am, we i gɛt bɛlɛ . Yu kin tɔk to yu dɔktɔ bɔt dis ɛn lan mɔ.
Aw dɛn kin trit am?
Bikɔs dis na sik we pɔsin kin gɛt fɔ ɔl in layf, i nɔ go ebul fɔ mɛn am kpatakpata. Bɔt nɔr wɔri , bɔrku pan in sik dɛn kin trit fayn fayn wan. Fɔ du dis, yu go nid fɔ wok wit wan tim we gɛt dɔktɔ dɛn, nɔto jɔs wan. Fɔ ɛgzampul:
- Di dɔktɔ dɛn we de du ɔpreshɔn
- Di wan dɛn we de mɛn di bɔdi
- Dɛntist dɛn
- Ay dɔktɔ dɛn
Yu kin nid ɛp frɔm spɛshal pipul dɛn we sabi du difrɛn tin dɛn. I impɔtant bak fɔ mek yu ɛn yu famili go to advays fɔ ɛp yu fɔ bia wit di strɛs we yu kin gɛt we yu de liv wit dis kayn sik we nɔ kin bɔku.
Na sɔm tritmɛnt fɔ di men sayn dɛm:
| Tritmɛnt | Tɔk bɔt |
|---|---|
| Ɔpreshɔn fɔ klif lip ɛn palata | Dɛn kin ebul fɔ mek dɛn krak krak ya fayn fayn wan if dɛn du ɔpreshɔn pan dɛn. |
| Tritmɛnt fɔ di tit | Dɛn kin chenj di tit dɛn we go de sote go wit dɛnt implant . Yɔŋ pikin dɛn kin yuz dɛnt we dɛn kin pul. |
| Ɔpreshɔn fɔ di aylid | Dɛn kin du ɔpreshɔn fɔ separet di aylid dɛn we dɔn stɔp. Sɔntɛnde, if di aylid stɔp na di aylid, i kin separet we dɛn nɔ du ɔpreshɔn pan am. |
| Tritmɛnt fɔ pul di skin | Dɛn fɔ trit wund dɛn we dɔn pul di skin fayn fayn wan. Sɔntɛnde, yu dɔktɔ kin advays yu fɔ klin di wund wit wik blich sɔlvushɔn , lɛk Dakins sɔlvushɔn, fɔ kil di jem dɛn. |
| Fɔ prɔblɛm dɛn we gɛt fɔ du wit di we aw pɔsin de yɛri | If yu nɔ de yɛri fayn ɛn yu yes infɛkshɔn de bikɔs ɔf wata we de gɛda na di yes, di tritmɛnt na fɔ put smɔl smɔl tiub dɛn na di yes. |
| Tɛrapi fɔ tɔk | Dis tritmɛnt kin rili ɛp pikin dɛn we gɛt prɔblɛm wit dɛn tɔk bikɔs dɛn nɔ de yɛri fayn ɔ dɛn palata skata. |
| Ɔda sɔlv dɛn | Yu kin yuz ay drɔp fɔ trit yay we dray, ɛn wig fɔ kɔba di ia we de lɔs ɔ we de tan. |
Mɛsej we dɛn kin kɛr go na os
- AEC sindrom na wan jɛnɛtik kɔndishɔn we nɔ kin apin so ɔltɛm.
- Dis nɔto sik we pɔsin kin pas. Dat min se i nɔ de skata frɔm wan pɔsin to ɔda pɔsin tru tɔch ɔ ɛni ɔda we.
- De sik kin difrɛn frɔm pɔrsin to ɔda pɔrsin, so nɔr kɔmpia yusɛf to ɔda pipul dɛm.
- Pan ɔl we dɛn nɔ kin ebul fɔ mɛn dis sik ɔltogɛda, bɔku fayn tritmɛnt dɛn de we kin ɛp fɔ kɔntrol bɔku pan di sayn dɛm ɛn liv nɔrmal layf.
- Fɔ dis, i rili impɔtant fɔ aks fɔ ɛp frɔm wan tim we gɛt difrɛn spɛshal dɔktɔ dɛn.
- If yu ɔ yu pikin gɛt ɛni wan pan dɛn sik ya, ɔ if yu gɛt ɛni kwɛstyɔn bɔt dis, duya tɔk to yu dɔktɔ.
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