Yu smɔl pikin kin gɛt wata we de rɔn bɔku tɛm? Yu nɔ ebul fɔ si in bɔdi afta i dɔn it? Yu tink se i kin mek sawnd we i de blo we i de blo? Dɛn tin ya kin bi sayn dɛm wae de sho se yu gɛt kɔmɔn kol, bɔt sɔmtɛm, sɔmtin kin de wae siriɔs pasmak biɛn am. As mama, na nɔmal tin fɔ mek yu wɔri bɔt dɛn tin ya. Tide, wi go tɔk bɔt wan sik wae nɔr kin bɔrku bɔt wae impɔtant ɛn de spɛshal tɛst wae dɛn kin yuse fɔ no bɔt am.
Fɔs, lɛ wi si, wetin na sistik fibrosis?
Fɔ tɔk am simpul wan, Sistik Faybrosis (CF) na wan jenɛtik kɔndishɔn we de pas dɔŋ tru wi jin dɛm, we min se i kin kɔmɔt frɔm we dɛn bɔn am. I nɔto sik we pɔsin kin pas. Di mכkus εn כda tin dεm we pכsin we gεt dis sik de mek kin tik bכku εn stika pas di wan dεm we nכmal pכsin de mek.
Tink bɔt am, di wɔl dɛn na di tiub dɛn (lɛk paip dɛn) na wi bɔdi nɔmal fɔ gɛt wan tin we tan lɛk tin we de slipul. Dis na wetin de mek wi ɔgan dɛn wet, klin, ɛn sef. Bɔt pan pɔsin we gɛt CF, dis mɔk kin tik, i kin stika, ɛn i kin gɛt gɔm. dis tik mכkus de bigin fכ blכk di tכb dεm εn di pasej dεm, spεshal wan na di lכng dεm εn di dijestiv sistεm (sεf di pankrias).
Dis kin mek i nɔ izi fɔ blo, i kin gɛt infekshɔn na in lɔng bɔku tɛm, ɛn ɔda tin dɛn we i kin gɛt we i de it bikɔs di bɔdi nɔ de tek di it we i de it fayn. Apat frɔm di lɔng ɛn pankrias, di sik kin afɛkt di liva, sayn, intestinal, ɛn di ɔgan dɛn we de mek uman bɔn pikin bak.
CF na wan sik we nɔ de mɛn. Dis min se i nɔ go ebul fɔ wɛl ɔl, bɔt if dɛn trit am fayn ɛn mɛn am, dɛn kin kɔntrol di sik dɛn ɛn pipul dɛn kin liv nɔmal layf. Na wan sik bak wae de kam wae de sik kin wɔs smɔl smɔl as tɛm de go.
Wetin na di sayn dɛm fɔ yɔŋ pikin we gɛt CF?
Pikin we gɛt CF kin sho wan ɔ mɔ pan dɛn sik ya di sem tɛm. Yu fɔ no bɔt dɛn sayn ya na yu pikin. Bɔt mɛmba se nɔto ɔl pikin we gɛt dɛn sik ya gɛt CF. Bɔt i impɔtant fɔ mek wi no bɔt dɛn.
| Di sayn we de sho se di sik de | Wan Simpul Ɛksplen |
|---|---|
| Fɔ nɔ ebul fɔ go bifo | Pan ɔl we di pikin de drink bɔku milk ɛn it fayn, i tan lɛk se i tan ɛn i nɔ de gɛt wet we fit in ej. di rizin fכ dis na biכs di pankrεas dakt dεm de blכk bay mכkus, we de mek di εnzym dεm we nid fכ daygεst it nכ de rich di intestinal dεm. |
| Stul dɛn we lɔs ɔ we gɛt ɔyl | Di stɔl kin blɔd, i kin gɛt dɔti smel, ɛn i kin tan lɛk se i gɛt ɔyl. Dis na bikɔs di fat we de kɔmɔt na it kin kɔmɔt na di bɔdi we dɛn nɔ digest. |
| I nɔ kin izi fɔ yu fɔ blo ɛn yu kin swɛt ɔltɛm | Tik tik mכkus kin stכk na di lכng, we kin mek i at fכ brith. We yu de blo, mɔ we yu de blo, yu de yɛri wan sawnd we de kɔmɔt na yu chɛst. |
| Infεkshכn dεm na di lכng bכku tεm | Bikɔs baktri dɛn kin gro izi wan pan tik tik mucus, bɔku tɛm sik dɛn lɛk nyumonia ɔ brɔnkayt kin kam. |
| Kɔf we nɔ go go | I kin gɛt kɔf we de kɔntinyu fɔ kɔf, we tan lɛk blɔd as di bɔdi de tray fɔ klin di mכkus we dɔn stɔp na di lכng. |
| Fɔ fil sɔl teist na di pikin in skin | Dis na wan spɛshal tin we rili spɛshal. Mama ɛn papa dɛn se we dɛn kis dɛn pikin, dɛn kin fil sɔl teys na dɛn skin. Wi go tɔk bɔt di rizin fɔ dis nɛks tɛm. |
Aw dɔktɔ dɛn kin no bɔt dis sik? - Swet Tɛst
We pikin gɛt dɛn sayn ya we wi dɔn tɔk bɔt, dɔktɔ kin tink se dis kin apin ɛn tɛl am fɔ du bɔku tɛst dɛn. Dɛn tin ya na fɔ tɛst di jɛnɛtiks ɛn fɔ tek ɛkstrem rayt na di chɛst. Bɔt di impɔtant tɛst fɔ kɔnfɔm di diagnosis fɔ CF na di swet tɛst.
Dis na tin we rili simpul fɔ du. Fɔ tɔk am simpul wan, wi swet gɛt sɔl. Dis sɔl na klorayd mek am.ɛn sɔdiɔm. Bikɔs klorayd nɔ de muv insay ɛn kɔmɔt na di sɛl dɛn na pɔsin we gɛt CF fayn fayn wan, dɛn swet gɛt bɔku mɔ klorayd pas nɔmal pɔsin. Wan swet tɛst de mɛzhɔ di amount of klorayd.
Aw dɛn kin du tɛst fɔ swet? Yu tink se i go mek di pikin fil bad?
As mama, na nɔmal tin fɔ mek yu gɛt dis kwɛstyɔn. Bɔt no rizin nɔ de fɔ mek wi fred. Dis nɔto tɛst we de mek pɔsin fil pen atɔl.
Dɛn kin du dis tɛst pan ɛnibɔdi we ol ɛni ej. Bɔt di pikin dɛn we dɛn jɔs bɔn nɔ go ebul fɔ mek dɛn swet fɔ di tɛst insay di fɔs de dɛn we dɛn de liv. So, dεn kin du dis tεst we di pikin ol tu to fכ wik.
Na dis na aw dɛn kin du di tɛst:
1. Fɔs, wan pan di mɛdikal staf go klin fayn fayn wan smɔl say na di pikin in an ɔ in leg (bɔku tɛm na di fɔrɛst).
2. Dɔn, dɛn kin put wan jel we gɛt wan kemikal we dɛn kɔl pilocarpine na di say, ɛn put wan smɔl ilɛktrɔd pan am.
3. naw dεn de gi wan rili sכm ilektrikal stimulashכn we dεn nכ kin notis tru dis εlektrod. Nɔ wɔri, dis nɔ de yuz nidul, ɛn i nɔ go ambɔg di pikin ɛni we. Yu kin fil lɛk se yu de tik smɔl. Dis kin mek di swet gland dɛn wok ɛn i kin mek di swet kwik kwik wan.
4. Afta sɔm minit, dɛn kin klin di say ɛn dɛn kin put spɛshal tin (lɛk plastic kɔyl) we kin gɛda swet pan am ɛn tay am.
5. We di pikin ple fכ lεk 30 minit, dεn kin ad di swet we dεn nid pan dis.
6. Dɔn dɛn kin sɛn dis swet sɛmpul we dɛn dɔn gɛda to di lab fɔ mɛzhɔ di kayn klorayd we de.
Wetin di ripɔt se?
We dɛn dɔn gɛt di tɛst ripɔt, di dɔktɔ kin no if di pikin gɛt CF ɔ i nɔ gɛt CF bay di valyu dɛn. di valyu dεm dεn mכsu insay yunit dεm we dεn kכl `mmol/L` (milimol pan wan lita).
Mɛmba se na yu dɔktɔ nɔmɔ go ebul fɔ ɛksplen dɛn rizɔlt ya ɛn advays yu bɔt wetin fɔ du nɛks. So nɔ panik ɛn disayd bay di nɔmba dɛn we de na di ripɔt.
| Klɔrayd Lɛvɛl | Wetin dat min? (Wetin i min) |
|---|---|
| If i pas 60 mmol/L | I go mɔs bi se di pikin gɛt CF. Di dɔktɔ kin ɔda fɔ mek dɛn du ɔda tɛst fɔ no if dis na tru. |
| If i smɔl pas 40 mmol/L | Di pikin nɔ gɛt CF. Di dɔktɔ go luk fɔ ɔda tin dɛn we kin mek pɔsin gɛt di sik. |
| Bitwin 40 ɛn 60 mmol/L | Dis na wan intamɛdiet rizɔlt. Yu go nid fɔ ripit di tɛst. Yu dɔktɔ kin tɛl yu bak fɔ du mɔ tɛst fɔ luk fɔ di kayn we dɛn we nɔ kin gɛt CF. |
Aw fɔ rɛdi di pikin fɔ di tɛst?
Dis na di pat we izi pas ɔl. Dis tɛst nɔ nid ɛni spɛshal pripiamɛnt.
- I nɔ nid fɔ chenj di tin dɛn we yu pikin de it, di mɛrɛsin we i de tek, ɔ di tin dɛn we i de du bifo di tɛst. Yu kin kɔntinyu yu de lɛk aw yu kin du.
- Di tin we impɔtant pas ɔl na fɔ nɔ put ɛni krim ɔ loshan na yu pikin in bɔdi di de bifo di tɛst. Ɛspɛshali nɔto pan di an ɔ leg we dɛn de tɛst. Dɛn tin ya kin afɛkt di tɛst rizɔlt.
If yu pikin gɛt dɛn sik ya, nɔ panik ɔ panik, bɔt go to dɔktɔ we sabi du am kwik kwik wan fɔ advays. Di kwik we dɛn no di sik, na di mɔ chans de fɔ bigin tritmɛnt ɛn gi di pikin wɛlbɔdi layf.
Mɛsej we dɛn kin kɛr go na os
- Sistik faybrosis na jεnεtik sik we de kכmכt frכm we dεn bכn am εn i de mek di bכdi in mכkus mεmbran dεm tik, we de afekt כgan dεm lεk di lכng εn pankrias.
- I rili impɔtant fɔ go to dɔktɔ if yu pikin gɛt sɔm sayn dɛn lɛk we i nɔ de gɛt bɔku bɔku bɔdi, we in chɛst kin rɔtin ɔltɛm, i nɔ kin izi fɔ blo, ɛn i kin gɛt ɔyl stɔl.
- Swet tɛst na di tɛst we impɔtant pas ɔl, we nɔ de mek pɔsin fil pen, ɛn we nɔ bad fɔ no bɔt dis sik.
- Dis tɛst de mɛzhɔ di kayn klorayd (sɔl) we de na di swet. Pikin dεm we gεt CF gεt bכku hכy pas nכmal lεvεl dεm fכ klorayd na dεn swet.
- Nɔ panik bɔt di tɛst rizɔlt, ɔltɛm tɔk to yu dɔktɔ fɔ mek yu ɔndastand am klia wan.
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