Yu smɔl pikin kin sik ɔltɛm? I kin bi SCID (Siv Kɔmbayn Immunodefisiɛns)! Lɛ wi tɔk bɔt am!

Yu smɔl pikin kin sik ɔltɛm? Yu tink se wan sik kin bɛtɛ bifo ɔda wan? Sɔmtɛm dis na nɔmal tin, bɔt i kin kam bak wit wan sik we nɔ kin apin so ɔltɛm bɔt we rili siriɔs. Na dat SCID (Severe Combined Immunodeficiency) bi. Lɛ wi tɔk bɔt dis smɔl mɔ tide, nɔto so? Nɔ wɔri, i rili impɔtant fɔ no bɔt dis.

Wetin na SCID (Sivɛri Kɔmbayn Imyunodefisiɛns)? Lɛ wi ɔndastand am simpul wan.

Fɔ tɔk am simpul wan, SCID na wan sik we nɔ kin apin so ɔltɛm, we nɔ kin apin so ɔltɛm we kin afɛkt smɔl pipul dɛn. I kin mek wi bɔdi in imyun sistɛm , we de fɛt sik, nɔ de wok fayn. I kin bi wan sik we rili siriɔs.

Wi kin kɔl dis ‘primary immune deficiency’. Sɔm buk dɛn kin kɔl am bak ‘inborn error of immunity’. Dat min se, na sɔntin we de frɔm di de we dɛn bɔn am ɛn i kin pas fɔ lɔng lɔng tɛm. difrεn jεnεtik chenj dεm kin mek dis SCID kכndyushכn.

Jɔs imajin, ivin na kɔntri lɛk Amɛrika, if dɛn bɔn lɛk 58,000 pikin dɛn ɛvri ia, na lɛk wan pan dɛn nɔmɔ go gɛt dis sik we dɛn kɔl SCID (Severe Combined Immunodeficiency). Yu kin imajin aw dat nɔ kin apin so ɔltɛm.

Wetin kin apin insay pikin we gɛt SCID?

Fɔ ɔndastand dis, wi fɔs nid fɔ luk aw wi bɔdi in imyun sistɛm, we na di ami we de fɛt sik, de wok.

Imajin, we pikin de na in mama in bɛlɛ, wan grup we gɛt sɛl dɛn we de fɛt sik kin bigin fɔ mek na in bɔdi. Di edkwata fɔ dis ami na di bon mɛro . Spɛshal sɛl dɛn de de, we wi kɔl ‘ stem sɛl ’ . Dɛn stem sɛl ya kin mek ɔl di tri men kayn blɔd sɛl dɛn:

• Rɛd blɔd sɛl dɛn: Na dɛn wan ya de kɛr ɔksijɛn ɔlsay na di bɔdi.
• Wait blɔd sɛl : Na dɛn sojaman dɛn ya na wi bɔdi we de protɛkt wi frɔm sik.
• Plɛtlɛt : Dɛn tin ya kin ɛp fɔ mek blɔd klɔt.

naw, pan dεn wayt bכdi sεl dεm ya, wan spεshal grup de we dεn kכl ‘limfosayt dεm’ . Dɛn wan ya kin fɛt sik dairekt wan. tu men kayn limfosayt dεm de: T-sεl dεm εn B-sεl dεm. Dɛn tu sɛl ya rili impɔtant fɔ fɛt sik.

• di T-sεl dεm de no di ‘invader’ dεm we de kכz sik – tin dεm lεk baktri dεm εn vayrus dεm – we de kam insay di bכdi, atak dεm, εn pwεl dεm.
• B-sεl dεm de mek ‘antibodi dεm’ . Dɛn antibodi ya tan lɛk mɛmori. We yu dɔn sik, yu kin mɛmba am ɛn yu kin rɛdi fɔ fɛt am if i kam bak.

di wכd ‘Combined’ we de insay di nem SCID (Severe Combined Immunodeficiency) min se dis sik de afekt כl tu di T-sεl dεm εn di B-sεl dεm. Na dat mek dɛn kɔl am ‘kɔmbayn’ dɛfisiɛns.

Pikin we gɛt SCID gɛt smɔl pan dɛn limfosayt ya, ɔ di sɛl dɛn we dɛn gɛt nɔ de wok fayn. So, bikɔs di imyun sistɛm nɔ de wok fayn, i kin rili at, sɔntɛnde i nɔ kin izi fɔ fɛt di jem dɛn—vayrɔs, baktri, ɛn fɛns.

Wetin kin mek pɔsin gɛt SCID?

Difrɛn kayn SCID (Severe Combined Immunodeficiency) de bak.

di kayn we we kכmכn pas כl na prכblεm wit wan jin na di X kromozom . Bɔku tɛm, dis kin afɛkt bɔy pikin dɛn nɔmɔ. Bikɔs gyal pikin dɛn gɛt tu X kromozom, ivin if wan gɛt prɔblɛm, dɛn imyun sistɛm kin stil wok bikɔs ɔf di ɔda X kromozom we gɛt wɛlbɔdi. Bɔt bɔy pikin dɛn gɛt wan X kromozom nɔmɔ. So if da jin de wik, di sik go bigin. Gɛl pikin dɛn kin jɔs bi ‘kɛriɔ’ fɔ di sik. Dis min se ivin if dɛn nɔ gɛt di sik, dɛn pikin dɛn kin pas di jin.

כda kayn SCID de we de k כz fכ wan εnzym we nid fכ divεlכpmεnt fכ di limfosayt dεm. apat frכm dis, SCID kin kכz bak fכ difrεn כda jεnεtik kכz dεm.

Wetin na di sayn dɛm fɔ SCID? Aw dɛn kin no se i gɛt am?

Pan ɔl we pikin dɛn we gɛt SCID kin tan lɛk se dɛn gɛt wɛlbɔdi we dɛn bɔn dɛn , prɔblɛm dɛn kin bigin fɔ kam as tɛm de go. Na sɔm sayn dɛn we yu fɔ wach bɔt:

• Fɔ nɔ ebul fɔ go bifo, nɔ fɔ gɛt bɔku bɔku bɔdi ɔltɛm .
• Dayarɛa we nɔ de dɔn .
• Infεkshכn dεm we de fכm bכku tεm, sכmtεm i kin rili bad . Dis min se yu chɛst de kɔntinyu fɔ kɔnjɛshɔn ɛn yu de kɔf.
• Na fεn infεkshכn we de mek wayt pat dεm na yu mכt εn trot (oral thrush) .De kam. Wi kin kɔl dis bak ‘Ullogam’.
• Apat frɔm dat, ɔda baktri, vayral, ɔ fɛns infɛkshɔn dɛn we at fɔ trit ɛn we kin rili bad kin apin bɔku tɛm. Fɔ ɛgzampul:
• Infεkshכn dεm na di ia (akyu otitis mεdia) .
• Sayn infεkshכn (sinusitis) .
• Skin rash we de kɔmɔt na di skin
• Bren fiva, mɛningɔyt
• Nyumonia

Imajin aw i go tranga fɔ mama ɛn papa dɛn if smɔl pikin kɔntinyu fɔ sik lɛk dis, ɛn if wan sik bɛtɛ bifo ɔda wan kam. So, if wan ɔ mɔ pan dɛn sik ya kɔntinyu, yu fɔ rili go to dɔktɔ kwik kwik wan.

Aw dɛn kin no se pɔsin gɛt SCID (Severe Combined Immunodeficiency)?

Laki, dɛn kin du wan simpul blɔd tɛst, we dɛn kɔl ‘newborn screening’ , naw fɔ chɛk fɔ sɔm sik dɛn na pikin dɛn jɔs afta dɛn bɔn dɛn . fכ egzampl, dεn kin no ‘sikl sεl sik’ εn ‘cystic fibrosis’ tru dis. Dɛn de du di sem kayn tɛst dɛn bak na Sri Lanka. di gud nyus na dat, dεn kin no SCID (Severe Combined Immunodeficiency) naw bak tru dis nyu bכbi skrinin na sכm kכntri dεm.

Dis we ya , we dɛn no di sik kwik kwik wan, dɛn kin bigin fɔ trit am kwik kwik wan. Dɔn di tin dɛn we kin apin kin bɛtɛ pasmak.

If di nyu bɔbɔ we dɛn de chɛk sho se i gɛt SCID, dɛn kin sɛn di pikin to spɛshal pɔsin we de wok fɔ di wan dɛn we nɔ ebul fɔ fɛt di sik. Da dɔktɔ de go tɛl dɛn fɔ du mɔ blɔd tɛst, ɛn sɔntɛm fɔ tɛst di jɛnɛtiks .

If sɔmbɔdi na di famili gɛt SCID, ɔ if famili histri de fɔ se i nɔ gɛt bɛtɛ imyun, mama ɛn papa kin gɛt kɔyl fɔ di jenɛtiks . Dɛn kin gɛt blɔd tɛst bak jɔs afta dɛn bɔn di pikin . Di kwik we dɛn no di sik, na di mɔ dɛn kin bigin fɔ trit am kwik kwik wan ɛn na di mɔ i go fayn.

Sɔntɛnde, if dɛn no di jin we de mek pɔsin gɛt SCID na wan famili, i pɔsibul fɔ tɛst di pikin fɔ di sik we dɛn bɔn am . Bɔt fɔ pikin dɛn we nɔ gɛt famili histri ɔ we dɛn nɔ skan tru nyu bɔn skrinin, i kin let lɛk 6 mɔnt bifo dɛn no di sik. Bay da tɛm de, i dɔn tu let.

Wetin na di tritmɛnt dɛm fɔ SCID?

SCID na pikin dɛn mɛdikal imejensi. Dis min se if dɛn nɔ trit dɛn pikin ya kwik, i go izi fɔ mek dɛn day bifo dɛn ivin rich dɛn fɔs batde. So, fɔ trit am kwik kwik wan rili impɔtant.

di tritmεnt we kכmכn pas כl na ‘stεm sεl transplant’. Disdεn kכl am bak ‘bon mכro transplant’, dis involv fכ gi stεm sεl frכm hεlty pכsin to sik pikin. di op na dat dεn nyu sεl dεm ya go bil di pikin in imyun sistεm bak.

• di mכst saksesful stεm sεl transplant kin bi if dεn tek di sεl dεm frכm wan brɔda we in jεnεtik mach.
• Sɔntɛnde, di mama ɛn papa dɛn sɛl dɛn kin kɔmpit bak.
• If nɔbɔdi nɔ de na di famili we mach, dɔktɔ dɛn kin yuz stem sɛl dɛn bak frɔm pɔsin we nɔ gɛt fambul.

Sɔm pikin dɛn we gɛt SCID kin nid kemotɛrapi bak bifo dɛn transplant dɛn.

di tin we imכtant pas ɔl na dat dεn kin du dis stεm sεl transplant insay di fכs mכnt dεm we di pikin de liv, bifo i gεt eni infεkshכn. Na da tɛm de di rizɔlt dɛn kin wok fayn pas ɔl.

Jin tɛrapi dɔn sho bak prɔmis rizɔlt insay klinik trial fɔ sɔm kayn SCID. Bɔt dɛn nɔ de yuz am bɔku bɔku wan yet na bɔku kɔntri dɛn na di wɔl. Risach bɔt jin tɛrapi fɔ SCID stil de go bifo.

We dɛn de trit pikin we gɛt SCID, bɔku tɛm, wan mɛdikal tim de we gɛt sɔm spɛshal pipul dɛn. Fɔ ɛgzampul:

• Pikin dɛn we de mɛn di sik dɛn we de ambɔg di bɔdi
• Dɔktɔ we de transplant bon mɛrɔ
• Pikin dɛn we sabi bɔt infɛkshɔn sik

Bebi dεm we gεt SCID de pan risk fכ gεt infεkshכn we de mek dεn layf de pan denja. So, dɔktɔ dɛn kin bigin fɔ gi dɛn mɛrɛsin fɔ ɛp fɔ mek dɛn nɔ gɛt di sik. Fɔ ɛgzampul, antibayɔtik, antivayrɔs, antifɔngal , ɛn antibodi/immunoglobulin injɛkshɔn . Sɔm pikin dɛn, i kin ivin nid fɔ put ɛnzaym insay dɛn jɛnɛtiks .

Mɔ tin dɛn fɔ no bɔt SCID

Apat frɔm di mɛrɛsin ɛn tritmɛnt, ɔda tin dɛn de we yu fɔ tek tɛm wit fɔ mek yu nɔ gɛt di sik. Yu fɔ mɛmba dɛn tin ya we yu de kia fɔ pikin we gɛt SCID:

• Fɔ mek di sik nɔ go skata, i nid fɔ de fa frɔm ɔda pipul dɛn. Dis min se yu fɔ gi am wan sɛpret rum ɛn mek shɔ se di tin dɛn we i tɔch klin.
• I nɔ fayn fɔ gi ɛni ‘layv vaysin’. Dis na bikɔs i kin denja fɔ gi pikin we gɛt SCID, ivin wan vayrɔs we wik, as vaysin. Sɔm ɛgzampul dɛn bɔt dis na:Rotavayrɔs vaysin, chikinpoks/varisɛla vaysin, mizɛl-mɔmps-rubɛla (MMR) vaysin, ɔral polio vaysin, BCG vaysin, ɛn layf flu vaksin.
• Di tin we impɔtant pas ɔl na fɔ mek nɔbɔdi we de liv na di sem os wit di pikin nɔ fɔ gɛt dɛn layf vaysin ya, bikɔs dɛn kin pas di sik to di pikin.
• If dɛn nid fɔ transfyushɔn blɔd, na blɔd we dɛn dɔn trit spɛshal wan. Dɛn kin du dis fɔ mek dɛn nɔ gɛt prɔblɛm dɛn we kin apin we dɛn gi dɛn blɔd.
• Yu kin nid fɔ stɔp fɔ gi yu mama in bɛlɛ fɔ sɔm tɛm te dɛn tɛst yu mama in milk fɔ si if i gɛt vayrɔs dɛn we kin mek yu gɛt infɛkshɔn. Fɔ fala yu dɔktɔ in instrɔkshɔn dɛn gud gud wan.

Aw una as mama ɛn papa go ɛp?

We dɛn de tɛst yu pikin fɔ SCID, ɛn we dɛn de trit yu, bɔku tin dɛn de we yu as mama ɔ papa kin du fɔ ridyus di risk fɔ gɛt di sik. Na sɔm pan dɛn:

• Limit di nɔmba fɔ di wan dɛn we kin kam na di os. I bεst fɔ mek smɔl pipul dɛn kam fɔ si di pikin.
• Nɔ kɛr yu pikin go na pɔblik ples dɛn we pipul dɛn kin bɔku , lɛk shopin mal ɛn fɛstival dɛn.
• Nɔ briŋ yu pikin nia ɛnibɔdi we gɛt kol , fiva, ɔ kɔf. If pɔsin lɛk dat de na os, kip am fa frɔm yu pikin.
• Bifo yu tɔch di pikin, mek shɔ se ɔlman we go de kia fɔ di pikin was dɛn an fayn fayn wan. Wash yu an wit sop ɛn wata we de rɔn fɔ at le 20 sɛkɔn.

Lɛ wi tink bɔt tumara bambay.

Bebi we gɛt SCID kin gɛt fɔ du bɔku mɛrɛsin ɛn fɔ de na ɔspitul bɔku tɛm. Dis kin rili strɛs ɛni famili. Bɔt mɛmba se nɔto yu wangren de.

Di mɛdikal tim de fɔ ɛp yu ɛn yu pikin bifo, di tɛm we dɛn de trit yu, ɛn afta dɛn dɔn trit yu. Yu kin gɛt ɛp ɛn ɛnkɔrejmɛnt bak frɔm sɔpɔt grup dɛn, soshal woka dɛn, fambul dɛn, ɛn padi dɛn. Sɔntɛm ɔganayzeshɔn dɛn de na Sri Lanka we de ɛp pikin dɛn we gɛt dis sik, so chɛk dɛn.

Fɔ fɛn mɔ infɔmeshɔn ɛn sɔpɔt na di intanɛt, yu kin go na intanashɔnal wɛbsayt dɛn lɛk dɛn wan ya (dɛn tin ya de insay Inglish):

• Imyun Dɛfisiɛns Fɔdayshɔn
• SCID, Enjɛl dɛn fɔ Layf

Di impɔtant tin dɛn we yu kin kɛr go na os frɔm dis atikul

Okay, so, frɔm wetin wi dɔn tɔk bɔt, dɛn tin ya na di impɔtant tin dɛn we yu nid fɔ mɛmba:

• SCID (Severe Combined Immunodeficiency) na wan sik we rili rεs bכt siriכs jεnεtik sik we de mek di pikin in imyun sistεm nכ de wok fayn fayn wan.
• If yu gɛt sɔm sayn dɛn lɛk fɔ gɛt siriɔs infɛkshɔn ɔltɛm, yu nɔ de gɛt bɔku bɔku bɔdi, ɔ yu nɔ de taya ɔltɛm , go to dɔktɔ wantɛm wantɛm.
• sכm tεm dεn we dεn de skrεn nyu bכbi kin no SCID kwik kwik wan.
• Fɔ no di sik kwik kwik wan ɛn fɔ trit am rili impɔtant. di men tritmεnt na stεm sεl transplant / bon mכro transplant.
• I rili impɔtant fɔ protɛkt pikin we gɛt SCID frɔm infɛkshɔn, ɛn dɛn fɔ tek spɛshal tin dɛn fɔ tek tɛm wit.
• Nɔto yu wan de. Gɛt ɛp frɔm dɔktɔ dɛn, famili, ɛn sɔpɔt grup dɛn.

A op se dis infɔmeshɔn go ɛp yu. Wi de wish yu pikin fɔ wɛl kwik kwik wan!

` SCID, Sivεr Kכmbayn Imyun Dεfisiεns, Imyun Dεfisiεns, Pikin dεm, Jεnεtik Sik, Bon Mכro Transplant, Nyu bכn Skrin