Yu pikin gɛt dɛn strenj sayn ya? Lɛ wi lan bɔt di sik we dɛn kɔl multiple sclerosis (MS) we dɛn kin gɛt we dɛn smɔl!

Yu smɔl pikin gɛt prɔblɛm fɔ waka wantɛm wantɛm? Ɔ dɛn nɔ de si fayn ɔ dɛn nɔ de si fayn? Sɔntɛnde, dɛn tin ya kin jɔs bi smɔl smɔl tin dɛn we kin kam. Bɔt nɔr kin bɔrku, dɛn kayn sik ya kin bi di fɔs sayn dɛm fɔ wan sik wae wi nɔr kin tɔk bɔt bɔrku, bɔt i rili impɔtant fɔ no bɔt. Tide wi go tɔk bɔt wan pan dɛn kayn tin ya, we dɛn kɔl `Multiple Sclerosis` ɔ `MS`, we kin afɛkt pikin dɛn we nɔ rich 18 ia yet.Nɔ wɔri, wi go tɔk bɔt dis simpul wan, insay wan we we yu go ɔndastand.

Wetin na di ``multiple sclerosis (MS)'' we dɛn pikin ya kin gɛt?

Fɔ tɔk am simpul wan, dis na sik we kin kam bikɔs di imyun sistɛm nɔ de wok fayn. Wi bɔdi in imyun sistɛm tan lɛk ami we de protɛkt wan kɔntri. I wok na fɔ protɛkt wi bɔdi bay we i de fɛt di jem ɛn sik dɛn we de kɔmɔt na do. כltu, insay pikin we gεt `MS`, dis imyun sistεm de mek sכm mistek. I kin bigin fɔ atak di wɛlbɔdi sɛl dɛn na in yon bɔdi.

Fɔ tɔk di kɔrɛkt tin, dis atak de tɔch di pikin in Sɛntral Nɛvɔs Sistɛm. Dat min se, di bren ɛn di spɛshal kɔd. di nεv dεm na di bren εn di spεnal kכd gεt wan tin we de kכba dεm rawnd dεm, lεk plastic sheath we de rawnd ilektrik waya. wi kכl dis kכva ``Myelin.'' ``Myelin'' na wetin de alaw mεsej fכ travul kwik εn sכmtεm tru di nεv dεm.

insay MS, di imyun sistεm de atak εn damej dεn maylin sεl dεm ya. I tan lɛk se dɛn kɔt di ilɛktrik waya in swɛt na say dɛn. Dis kin mek di nεv mεsej dεm we de kכmכt na di bren to di כda pat dεm na di bכdi de blok כ disrupt.

Dis damej we di maylin de du kin mek yu gɛt sɔm sayn dɛm lɛk we yu mɔsul dɛn wik, yu taya, yu nɔ de mɛmba fayn, yu nɔ kin ebul fɔ waka, ɛn yu kin chenj yu yay.

Imajin, yu pikin gɛt wan padi we nem Nilanthi. Wantɛm wantɛm, Nilanthi bigin fɔ fil pen na wan yay, ɛn in yay nɔ de si bɛtɛ igen. Na we i sho am to dɔktɔ nɔmɔ i kam fɔ no se i kin bi sayn fɔ MS kwik kwik wan.

Naw, no mɛrɛsin nɔ de fɔ MS. Bɔt, fayn tritmɛnt dɛn de fɔ kɔntrol di sayn dɛm ɛn fɔ ridyus di disabled fɔ lɔng tɛm we di sik kin kam wit. So nid nɔ de fɔ wɔri.

Us kayn MS kin apin to pikin dɛm?

di kayn MS we kin kכmכn pan pikin dεm na ``Relapsing-Remitting MS (RRMS) .`` Na lεk 98% pan di pikin dεm gεt dis kayn. If na so i bi, di sayn dɛm kin kam wantɛm wantɛm (flare-up/relaps), kin las fɔ sɔm tɛm, dɔn i kin dɔŋ ɔ dɔnawe wit am kpatakpata (remission). Dɛn kin kam bak afta sɔm tɛm. Dis we ya, de sik kin kam ɛn go ɔlsay na di pikin in layf.

Di ɔda kayn na `Primary Progressive MS (PPMS)`.Dis nɔ kin apin to pikin dɛn. Wetin kin apin na dat, de sik kin wɔs smɔl smɔl as tɛm de go. Na smɔl impɔtant tin de we de apin na di intaval dɛn.

Wetin na di fɔs sayn dɛm fɔ MS pan pikin dɛm?

We dɔktɔ dɛn de no se yu gɛt MS, dɛn kin pe atɛnshɔn mɔ to dɛn fɔs sayn dɛn ya:

• Optic Neuritis: Dis na wan sik wae de mek wan ɔr tu yay fil pen, wit wae yu nɔr de si fayn fayn wan. sכm spεshal wan, di optik nεv we de insay di yay de inflam. Sɔm pikin dɛn kin gɛt chenj bak na dɛn kɔlɔ we dɛn de si.
• Transvas Maylaytis: Dis na we inflameshn na wan pat pan di spεnal kכd de mek ska, blכk di nεv signal dεm. Dis kin mek yu gɛt sɔm sayn dɛm lɛk fɔ wik na yu an ɛn fut, yu nɔr kin ebul fɔ waka, ɛn yu nɔr kin ebul fɔ waka.

Imajin, yu pikin, lɛ wi se in nem na Kavindu. Wan de, we Kavindu kam bak na os frɔm skul, i se, "Mama, mi leg dɛn kin fil lɛk se i nɔ gɛt bɛtɛ trɛnk." Afta sɔm tɛm, i nɔ kin izi fɔ am fɔ waka. Dis kin bi bikɔs ɔf Transvas Maylaytis.

Wetin na di kɔmɔn sayn dɛm fɔ MS pan pikin dɛm?

Di sayn dɛm fɔ MS kin difrɛn frɔm wan pɔrsin to ɔda pɔrsin. Ivin pan di sem pikin, di sayn dɛm kin difrɛn frɔm wan de to ɔda de. Nɔto ɔlman go gɛt ɔl dɛn kayn sik ya, bɔt bɔrku tɛm na smɔl wan nɔmɔ dɛn go si.

• Numbness, tingling (paresthesia) : Dis sens kin apin na say dεm lεk di an, fut, εn fes.
• Diziz we pɔsin kin gɛt
• I nɔ izi fɔ waka ɔ fɔ balans
• Taya: Dis nɔto jɔs nɔmal taya. Na filin fɔ taya ilɛksɛf yu slip bɔku.
• Di mɔsul dɛn we wik
• Tremor/shaking we de mek pɔsin shek
• Prɔblɛm wit kɔnsɛntreshɔn ɔ mɛmori
• di tin dεm we yu de si: lεk blכr vishכn כ dכbl vishכn.

Jɔs bikɔs yu gɛt wan ɔ tu pan dɛn sik ya, nɔ tink se na MS. Bɔt if dɛn sik ya kɔntinyu ɔ yu pikin gɛt prɔblɛm, i impɔtant fɔ go to dɔktɔ.

Wetin kin mek pikin dɛn gɛt MS?

Di men tin we kin mek pɔsin gɛt MS na dimaylineshɔn . Wi bin dɔn tɔk bifo tɛm bɔt di maylin sheath. Demyelination na di damej we di maylin sheath de du.

wi pikin in imyun sistεm, fכ sכm rizin, de mistek dis hεlty pat we dεn kכl `Myelin` as sכmtin we de ambɔg di bכdi. Dɔn i bigin fɔ atak am. Dis atak de damej di `Myelin`. Ska dεm (dεn kin kכl dεm bak `lεshכn` כ `plaks` we dכkta dεn kin fכm) kin fכm na dεn εria dεm ya we dεn dכn pwεl. yu kin si dεn ska dεm ya wit skan dεm lεk `MRI (Magnetic Resonance Imaging)`.

we di maylin dכn pwεl, di transmishכn fכ mεsej frכm di bren to difrεn pat dεm na di bכdi kin disrupt. Na dat kin mek di sayn dɛm fɔ MS.

Risach pipul dɛn stil nɔ no bɛtɛ bɛtɛ wan wetin mek di imyun sistɛm nɔ de biev fayn lɛk dis.

Wetin na di risk factor dɛm fɔ pikin dɛm wae gɛt MS?

Dɛn dɔn si se sɔm tin dɛn we kin afɛkt di mama we i gɛt bɛlɛ kin mek di pikin gɛt MS mɔ:

• We pɔsin gɛt pɔyzin: Fɔ ɛgzampul, we pɔsin de smok sɛkɔnhand, peshɛnt sayd, ɛn ɔda tin dɛn.
• Di smɔl smɔl vaytamɛn D na di blɔd.
• If yu gɛt sɔm vayral infɛkshɔn: Fɔ ɛgzampul, Epstein-Barr vayrɔs ɔ mononucleosis (dɛn kin kɔl am bak di kis sik).
• Fat.

So, i rili impɔtant fɔ mek yu gɛt wɛlbɔdi we yu gɛt bɛlɛ. If yu fala di advays we dɔktɔ gi yu, dat kin mek yu nɔ gɛt dɛn prɔblɛm ya.

Wetin na di prɔblɛm dɛn we kin apin we pɔsin kin gɛt MS we i smɔl?

Pikin dɛn kin gɛt sɔm prɔblɛm dɛn bikɔs ɔf MS. Bɔrku tɛm dɛn tin ya nɔ kin apin wantɛm wantɛm, ɛn kin jɔs afɛkt dɛn as dɛn dɔn big.

• I nɔ izi fɔ waka we dɛn nɔ gɛt ɛnibɔdi fɔ ɛp yu.
• Pwɛl hat ɛn Wɔri.
• I nɔ izi fɔ du skul wok.
• Di kɔdineshɔn we di an dɛn nɔ de du fayn.
• I nɔ izi fɔ kɔntrol yu urine ɔ stɔl (incontinence).

Nɔto ɔl dɛn tin ya kin afɛkt ɔl pikin, bɔt i impɔtant fɔ no bɔt dɛn tin ya so dat yu go gɛt ɛp kwik if nid de.

Aw dɔktɔ dɛn kin no se pikin dɛn gɛt MS?

Dɔktɔ kin no if pikin gɛt MS bay we i de du ɛgzam pan in bɔdi, ɛgzam fɔ di nyurolɔjik, ɛn sɔm ɔda spɛshal tɛst dɛn . We dɛn de du dɛn tɛst ya, di dɔktɔ go aks yu kwɛstyɔn dɛn bɔt di sik we yu pikin gɛt ɛn if ɛnibɔdi na yu famili dɔn gɛt dis sik.

Test fɔ no if pɔsin gɛt di sik kin ɛp bak fɔ pul ɔda sik dɛn we gɛt di sem kayn sayn dɛn we gɛt di sem kayn MS. Dɛn tɛst ya na:

• Blɔd tɛst ɛn urine tɛst.
• imej tεst dεm lεk MRI (Magnetic Resonance Imaging) skan (tεst dεm de bak we de luk di nεv dεm na di yay, lεk Optical Coherence Tomography).
• Lumbar Pɔnkshɔn: .insay dis, dεn de tek sכm pan di wata we de rawnd di spεnal kכd εn egzamin am.
• Evoked Potential (EP) Test: dis de mכsu di spid we di mεsej dεm de travul tru di nεv dεm.

Bikɔs di sayn dɛm fɔ MS tan lɛk bɔku ɔda sik dɛm, i kin tek sɔm tɛm fɔ no di rayt sik. Dis kin bi smɔl prɔblɛm fɔ mama ɛn papa, ɛn i kin nid fɔ go to dɔktɔ bɔku tɛm. Bɔt we dɛn dɔn no di rayt we fɔ no if i gɛt di sik, i pɔsibul fɔ trit yu pikin fayn ɛn ɛp am fɔ gɛt gladi at we nɔ go ambɔg am.

Yu tink se yɔŋ pikin dɛn kin no `MS`?

Di sayn dɛm fɔ MS nɔ de si we dɛn bɔn am. So, i nɔ kin izi fɔ mek dɛn no se pikin gɛt MS. Di sayn dɛm kin sho as di pikin de big. Bɔrku tɛm, dis sik kin bigin wae pɔrsin de bɔn. Bɔrku tɛm, dɛn kin no bɔt dis sik bifo dɛn ol 16 ia.

Aw dɛn kin trit MS pan pikin dɛn?

Di men tritmɛnt fɔ rilapsing-remitting MS (RRMS), we kin apin to pikin dɛn, na di sik-modifying therapy (DMT). Dɛn DMT mɛrɛsin ya kin kɔntrol aw di sik de go bifo ɛn dɛn kin ridyus di frɛkuɛns fɔ di sik. Wan mɛrɛsin we di FDA (Food and Drug Administration) dɔn gri fɔ na wan pil we dɛn kɔl fingolimod . I fayn fɔ pikin dɛn we ol 10 ia ɔ pas dat. Naw dɛn de stɔdi ɔda DMT dɛn fɔ yuz na pikin dɛn.

Apat frɔm dat, dɔktɔ dɛn kin trit di pikin in patikyula sayn dɛn bak. Dɛn tin ya kin bi:

• Occupational Therapy: I de ɛp fɔ du di wok dɛn we pɔsin kin du ɛvride.
• Fizik Tɛrapi: I de ɛp fɔ mek di bɔdi gɛt trɛnk ɛn balans.
• Spich Therapy: If yu gɛt prɔblɛm fɔ tɔk ɔ fɔ swɛla.
• Nyurosaykolojik tɛst ɛn tritmɛnt dɛm: I kin ɛp wit tin dɛm lɛk mɛmori, atɛnshɔn, ɛn lanin.

If di sik dɔn afɛkt di pikin in mɛmori ɛn tinkin abiliti (cognitive function), dɛn kin nid ɔda sɔpɔt na skul.

Yu kin gɛt di chans bak fɔ tek pat pan klinik trial dɛm we de tɛst nyu tritmɛnt dɛm. Yu dɔktɔ go tɛl yu mɔ bɔt dis.

Ustɛm a fɔ go to mi pikin in dɔktɔ?

If yu pikin tɛl yu bɔt aw i de fil lɛk se i nɔ de fil fayn, i de chenj in yay, ɔ ɛni ɔda tin we nɔ kɔmɔn, i impɔtant fɔ tɔk to yu pikin in dɔktɔ wantɛm wantɛm. Fɔ no MS kwik kwik wan na in bɛtɛ. Dɔktɔ dɛn kin chɛk yu pikin ɛn no di bɛst we fɔ du fɔ no if i gɛt di sik.

Afta dɛn dɔn no se yu gɛt di sik, yu ɔ yu pikin fɔ tɛl di mɛdikal tim if ɛni nyu sayn de sho ɔ if di sik wɔs wantɛm wantɛm (flare-up).

Wetin na di fiuja fɔ pikin dɛn we gɛt MS we dɛn smɔl?

Pikin dɛm we dɛn no se gɛt MS kin jɔs gɛt fayn tin fɔ tink bɔt tumara bambay. Tritmɛnt dɛn de fɔ ridyus di frɛkuɛns ɛn di kayn sik we dɛn kin gɛt. Fɔ mek yu nɔ gɛt disabled fɔ lɔng tɛm, dɛn fɔ de manej di sik ɔlsay na dɛn layf. Yu pikin go nid fɔ mit wit dɛn MS mɛdikal tim ɔltɛm insay in layf.

Sɔm pikin dɛm we gɛt rilaps-remitting MS (RRMS) kin gɛt wan sik we dɛn kɔl sɛkɔndari prɔgrɛsiv MS (SPMS) we dɛn big. Dis na wae de sik kin wɔs smɔl smɔl. Bɔt risach dɔn sho se pipul dɛn we dɛn kin no se gɛt MS we dɛn smɔl, kin slo fɔ go bifo pan di sik pas di wan dɛn we kin gɛt SPMS we dɛn big.

Yu tink se MS go afɛkt mi pikin in skul layf?

Bikɔs MS kin afɛkt di pikin in mɛmori ɛn tink skil (cognitive function), di pikin kin gɛt prɔblɛm dɛn we i de du na skul. So, i fayn fɔ mek yu du at le wan nyurosaykolojik tɛst. Afta dat, i impɔtant fɔ tɔk to di pikin in ticha dɛn ɔltɛm. Yu kin gɛt sɔpɔt fɔ ɛp di pikin fɔ go bifo pan in yon pawa ɛn fɔ rich in edyukeshɔn gol dɛm.

Bɔrku pikin dɛm wae gɛt MS kin de wit ɔda pikin dɛm wae gɛt dɛn ej. Dɛn kin ple ɛn tek pat pan aktiviti dɛn jɔs lɛk ɔda pikin dɛn.

If yu gɛt ɛni kwɛstyɔn, di dɔktɔ go advays yu if sɔm tin dɛn we yu fɔ du nɔ bad fɔ di pikin.

As mama ɔ papa, yu kin rili wɔri we yu kam fɔ no se yu pikin gɛt MS. Dat na nɔmal tin. Bɔt mɛmba se, bɔku pan di kes dɛm fɔ MS we kin afɛkt pikin dɛm na rilapsing-remitting (RRMS). Dis min se di sayn dɛm kin kam ɛn go. Dɔktɔ kin mek wan tritmɛnt plan fɔ ridyus di frɛkuɛns ɛn di kayn sik we dɛn kin gɛt. Pan ɔl we MS na sik we de ɔlsay na in layf ɛn we nɔ gɛt ɛni mɛrɛsin, if dɛn mɛn am fayn, yu kin ɛp yu pikin fɔ ple ɛn lan wit smɔl tin dɛn we de ambɔg am.

Mɛsej we dɛn kin kɛr go na os

• di pikin MS na wan kכndyushכn we di imyun sistεm de atak di maylin na di nεv sεstem.
• Di sayn dɛm kin difrɛn, ɛn kin bi wae yu nɔr de si fayn, yu nɔr de fil fayn, yu nɔr kin ebul fɔ waka, ɛn yu taya.
• Dɛn kin kɔntrol di sik wit aw dɛn kin no am kwik kwik wan ɛn trit am lɛk `DMT`.
• Di pikin kin nid ɛkstra sɔpɔt na skul ɛn ɛvride layf, bɔt bɔku pikin dɛn kin liv nɔmal layf.
• If yu pikin gɛt ɛni sik we nɔ kɔmɔn, go to dɔktɔ wantɛm wantɛm. Nɔr frayd, wit de rayt infɔmeshɔn ɛn sɔpɔt, yu kin ebul fɔ bia wit dis kayn tin.

`Childhood MS, Multiple Sclerosis, Nɛvɔs Sistɛm, Maylin, Imyun Sistɛm, Simptom dɛm, Tritmɛnt