Yu de wɔri smɔl bɔt aw yu smɔl titi de divɛlɔp? I bin de rɔn rawnd, ple, ɛn tɔk bɔku, ɛn wantɛm wantɛm i tan lɛk se i de slo? Na nɔmal tin fɔ mek mama ɔ papa fil fred ɛn wɔri we yu si sɔntin lɛk dis. Tide wi go tɔk bɔt wan pan dɛn kayn tin ya. Dɛn kɔl dis Rɛt Sindrom. Dis na wan sik we nɔ kin apin so ɔltɛm we kin afɛkt gyal pikin dɛn mɔ. Nɔ wɔri, lɛ wi tɔk bɔt ɔltin klia wan ɛn simpul wan.
Wetin na di rial tin we kin mek pɔsin gɛt di sik we dɛn kɔl Rett syndrome?
Fɔ tɔk am simpul wan, di sik we dɛn kɔl Rett syndrome na wan sik we pɔsin kin gɛt we i gɛt prɔblɛm wit in jɛnɛtiks. Ɛni sɛl na wi bɔdi gɛt sɔntin we dɛn kɔl kromozom. uman pikin gεt tu X kromozom dεm (XX). wan chenj, כ mכtεshכn, insay wan jin we dεn kכl MECP2 na dis X kromozom na di men tin we de mek di Rεt sεndrכm.
sayɛnsman dεm biliv se di MECP2 jin de ple wan rili imכtant rol fכ divεlכpmεnt na di bren. we difεkt de na dis jin, i de afekt di pikin in bren dεn divεlכpmεnt dairekt wan. Na dat kin afɛkt tin dɛn lɛk fɔ tɔk, fɔ waka, ɛn fɔ yuz di an ɛn fut dɛn.
Di impɔtant tin na dat pan ɔl we di sik we dɛn kɔl Rett syndrome na wan sik we pɔsin kin gɛt frɔm in bɔdi, i nɔ kin pas frɔm mama ɔ papa to pikin. Na mכtεshכn we de apin randomly insay pikin in sεl dεm. Dis min se pikin kin gɛt am ilɛksɛf nɔbɔdi nɔ gɛt am na yu famili. So nɔ blem yusɛf ɔ yu patna fɔ dis.
Dɛn kin du wan jenɛtik tɛst fɔ no if pɔsin gɛt dis sik. Bɔku tɛm, dɛn kin du dis wit blɔd sɛmpul. Yu dɔktɔ go rifer yu fɔ dis tɛst if nid de.
Wetin na di difrɛns bitwin di sik we dɛn kɔl Rett syndrome ɛn ɔtizm?
Bikɔs sɔm pan de sayn dɛm kin fiba, sɔmtɛm dɛn kin kɔnfyus dɛn tu tin ya wit dɛnsɛf. pan ɔl tu di kes dɛm, di pikin kin gɛt prɔblɛm wit di soshal intarakshɔn ɛn kɔmyunikeshɔn. Bɔt, klia difrɛns de.
| Di kwaliti we pɔsin gɛt | Di sik we dɛn kɔl Rett Syndrome | Ɔtizm (Ɔtizm Spɛktrum Disɔda) . |
|---|---|---|
| Afɛkt | Na gyal pikin dɛn nɔmɔ i kin afɛkt mɔ. | Dɛn kin si am mɔ pan bɔy pikin dɛn. |
| Di ed we de gro | di ed growth de slo dכn ova tεm (maycrocephaly). | Bɔku tɛm, i nɔ kin afɛkt di we aw di ed de gro. |
| Yuz yu an | Di an wok dɛn we dɛn dɔn lan kin lɔs. di muvmεnt dεm we de ripit lεk fכ rכb an tכgeda εn was an dεm de sho. | Nɔbɔdi nɔ go lɔs fɔ yuz an. Ɔda tin dɛn kin de we dɛn kin du fɔ ripit. |
| Sɔshial kɔnekshɔn dɛn | Bɔku tɛm, dɛn kin lɛk pipul dɛn mɔ. Dɛn kin lɛk fɔ sho se dɛn lɛk dɛn ɛn sho se dɛn lɛk dɛn. | Sɔm pikin dɛn lɛk tɔys pas pipul dɛn ɛn dɛn kin lɛk fɔ de fa frɔm di sosayti. |
| Prɔblɛm fɔ blo | yu kin si di patεn dεm we nכ de rεgulεr lεk fכ brith kwik εn fכ hכl di briz. | Dɛn kayn prɔblɛm ya we pɔsin kin gɛt we i de blo. |
Aw dis tin kin afɛkt bɔy pikin dɛn?
Dis nɔ kin apin so ɔltɛm. biכs man pikin gεt wan X kromozom nכmכ (XY), if di MECP2 jin pan da wan X kromozom de dεm, di ifekt dεm kin rili bad. Bɔku tɛm, dɛn kayn man pikin dɛn de kin day we dɛn bɔn dɛn ɔ jɔs afta dat.
Wetin na di sayn dɛm wae de sho se yu gɛt Rett syndrome?
Dɛn sayn ya kin difrɛn frɔm wan pikin to ɔda pikin. dεn kin apin insay di fכs 6-18 mכnt dεm na di pikin in layf.Dɛn sayn ya kin bigin fɔ sho di tɛm we pɔsin de bɔn. Pan ɔl we fɔs i kin tan lɛk se di pikin de divɛlɔp nɔmal wan, chenj kin apin smɔl smɔl ɔ wantɛm wantɛm.
Na sɔm pan di men sayn dɛm wae de sho se yu gɛt dis sik:
- di pikin in bren de gro sloslo: di pikin in bren nכ de divεlכp fayn, we de mek in ed saiz sכm. Dɔktɔ dɛn kɔl dis maykrosɛfali .
- Lɔs di an fɔ wok: Pikin we bin sabi fɔ ol tɔys ɛn du tin wit in an nɔ kin ebul fɔ du dat igen. Bifo dat, i kin kɔntinyu fɔ du di sem tin dɛn lɛk fɔ rɔb in an dɛn togɛda ɛn was in an dɛn.
- I nɔ ebul fɔ tɔk igen: Pikin we bin de tɔk bitwin 1 ɛn 4 ia kin stɔp fɔ tɔk wantɛm wantɛm.
- Prɔblɛm fɔ waka ɛn muv: Prɔblɛm wit mɔsul ɛn balans kin mek yu nɔ waka fayn. Yu kin ivin nɔ ebul fɔ waka atɔl.
- Prɔblɛm fɔ blo: Dɛn kin si fɔ kɔntinyu fɔ blo kwik kwik wan ( hyperventilation ) ɛn fɔ ol di briz.
- Sɔm kayn sik: Bɔrku pikin dɛm wae gɛt Rɛt sindrom kin gɛt sik sɔm tɛm na dɛn layf.
- Ɔda sayn dɛm: Yu kin si bak aw yu de biev chenj lɛk skɔliosis , yu yay nɔr de muv fayn, yu nɔr de slip fayn , yu tit de grind, ɛn yu kin vɛks ɔr yu kin kray ɔltɛm.
Di 4 stej dɛm fɔ di sik we dɛn kɔl Rett syndrome
Dis sik kin go bifo tru 4 stej, bɔt i nɔ kin afɛkt ɔl pikin di sem we.
| Stej | Tɛm | Tin dɛn fɔ si |
|---|---|---|
| Faz I: Di fɔs stej | 6 - 18 mɔnt | Di sayn dɛm wae de sho aw pɔrsin de fil kin rili klia. Di ay kɔntakt nɔ de go, i nɔ de intres pan tɔys, i de delay fɔ kray ɛn sidɔm. |
| Faz II: I de go dɔŋ kwik kwik wan | 1 - 4 ia | Di skil dɛm we di pikin dɔn lan (fɔ tɔk, yuz an) kin lɔs kwik kwik wan. di ed we de gro slo, εn di an muvmεnt dεm we nכ nכmal de bigin. |
| Stej III: Plɛtɔ | Frɔm 2 - 10 ia te i big | Di rigrɛshɔn de stɔp. Pan ɔl we prɔblɛm de wit muvmɛnt, di we aw pɔsin de biev (kray, vɛks) kin bɛtɛ smɔl. Di kɔmyunikeshɔn ɛn yuz an kin bɛtɛ smɔl. Epilepsy kin apin. |
| Stej IV: Fɔ mek yu nɔ ebul fɔ muv mɔ | Afta 10 ia | Muvmɛnt kin bi mɔ limited. di mכsul dεm we wik εn di sכlכsis de inkrεs. Bɔt epilepsy ɛn di kɔmyunikeshɔn kin bɛtɛ. |
Wetin na di tritmɛnt dɛm fɔ dis?
Bɔt i sɔri fɔ no se, no mɛrɛsin nɔ de fɔ mɛn di sik we dɛn kɔl Rett syndrome. Bɔt bɔku tritmɛnt dɛn de we go ɛp fɔ kɔntrol di sik dɛn ɛn gi yu pikin di bɛst kwaliti fɔ liv. Dis na tim fɔ tray fɔ du sɔntin. Yu dɔktɔ, di wan dɛn we de mɛn yu bɔdi, ɛn di wan dɛn we de mɛn yu fɔ tɔk, ɔl gɛt fɔ du wit dis.
- Mɛrɛsin: Dɛn kin gi mɛrɛsin fɔ kɔntrol tin dɛn lɛk epilepsy, mɔsul dɛn we de spam, ɛn prɔblɛm wit slip. Dɛn nɔ tu te yet we dɛn dɔn gri fɔ wan nyu mɛrɛsin we dɛn kɔl trofinetide (Daybue) , ɛn i kin kɔntrol sɔm pan di sik dɛn. Tɔk to yu dɔktɔ bɔt dis.
- Fizik Tɛrapi: Dis kin ɛp fɔ mek di pikin ebul fɔ muv, balans, ɛn ebul fɔ waka. i imכtant bak fכ di spεnal alaynsmεnt.
- Occupational Therapy: Dis kin ɛp fɔ mek di pikin in an dɛn ebul fɔ du di wok dɛn we i kin du ɛvride fɔ insɛf, lɛk fɔ drɛs ɛn it.
- Spich Therapy: Ilɛksɛf di pikin nɔ ebul fɔ tɔk, dɛn kin tich am fɔ tɔk wetin i tink bay ɔda we, lɛk fɔ yuz in yay ɛn pikchɔ.
- Gud it: I impɔtant fɔ mek di pikin gro fayn fayn wan. If i nɔ izi fɔ yu pikin fɔ swɛla, yu fɔ go to yu dɔktɔ.
Fɔ kia fɔ pikin we gɛt Rɛt sindrom na prɔblɛm. Bɔt mɛmba se nɔto yu wangren de. Ɔganayzeshɔn ɛn grup dɛn de we de sɔpɔt mama ɛn papa dɛn we go ebul fɔ gi yu pikin di sɔpɔt we i nid. We yu gɛt kɔnekshɔn wit dɛn, dat kin mek yu gɛt bɔku trɛnk.
Mɛsej we dɛn kin kɛr go na os
- Rett Syndrome na wan sik wae nɔr kin bɔrku pan jɛnɛtiks wae kin mɔs afɛkt gyal pikin dɛm.
- Dis nכ to tin we dεn kin gεt frכm mama εn papa, na random chenj na di pikin in jin dεm.
- di men kכntribyushכn na we di pikin de lכs di skil dεm we i lan (fכ tכk, waka, yus in an) ova tεm (rεgrεshכn).
- Pan ɔl we dis sik nɔ go ebul fɔ wɛl ɔl, mɛrɛsin ɛn difrɛn we dɛn fɔ mɛn di pikin kin kɔntrol di sik dɛn ɛn gi di pikin gud layf.
- If yu gɛt ɛnitin fɔ wɔri bɔt aw yu pikin de gro, tɔk to yu dɔktɔ wantɛm wantɛm. I impɔtant fɔ mek yu disayd fɔ du sɔntin we yu no bɔt ɛn nɔ panik.
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