Yu pikin gɛt dis siriɔs sik bak? Lɛ wi lan bɔt SCID (Severe Combined Immunodeficiency)!

Yu smɔl pikin kin sik ɔltɛm? Yu tink se ivin smɔl kol kin tɔn to sɔntin we siriɔs? Sɔntɛnde, as mama ɛn papa, wi kin wɔri bɔku bɔt dɛn tin ya. Tide, wi go tɔk bɔt wan sik we nɔ kin apin so ɔltɛm we kin mek pɔsin fred ɛn we pɔsin kin ebul fɔ kɔntrol if dɛn tɛl yu fayn fayn wan. Dɛn kɔl am SCID (Severe Combined Immunodeficiency). Di nem tan lɛk se i de mek wi fred smɔl, bɔt lɛ wi tɔk bɔt am ditayli ɛn simpul wan.

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 . Wetin kin apin na we dɛn bɔn pikin dɛn, dɛn imyun sistɛm we de fɛt sik kin wik ɔ nɔ de igen. Tink bɔt wi imyun sistɛm as ami we de protɛkt wi kɔntri. na dis sistεm we de protεkt wi bay we i de fכt εnεmi (i.e. jεm) we de kכmכt na do. So, dis "ami" fכ pikin we gεt SCID rili wik, כ i kכlכsכl nכ de.

Dɛn kɔl dis praymari imyunodefisiɛns disɔda . Dat min se na sɔntin we de de we dɛn bɔn am. So, fɔ bebi dɛn we gɛt SCID, ivin smɔl sik we wi nɔ go bisin bɔt, lɛk kol, nɔ kin izi fɔ win. If dɛn nɔ trit dis sik, i kin ivin mek pɔsin in layf de pan denja insay wan ɔ tu ia. Na dat mek i rili impɔtant fɔ no bɔt dis.

Wetin na "Kɔmbayn" imyun dɛfisiɛns?

Wi imyun sistɛm tan lɛk difens fɔs na wi bɔdi. We fɔrina tin dɛn lɛk vayrɔs , baktri , fɛns , protozoa , ɔ pɔyzin, kam insay di bɔdi, dis difɛns fɔs kin no dɛn ɛn go fɛt. Di men sojaman dɛn we de fɛt dis fɛt na wayt blɔd sɛl dɛn . Pan dɛn , di limfosayt dɛn spɛshal. Tri kayn limfosayt dεm de:

• T-sεl dεm
• B-sεl dεm
• Natural Killer sel dεm (NK sεl dεm) .

pan pikin dεm we gεt SCID, bכku tεm dεn T-sεl dεm ya dεn kin dכn כ dεn nכ de kכmplit. biכs di B-sεl dεm nid εp frכm di T-sεl dεm fכ wok fayn fayn wan, we di T-sεl dεm lכs, di B-sεl dεm nכ de wok fayn bak. na dat mek dεn kכl am "kכmbayn" - biכs na kכmbaynshכn fכ sεvεra imכtant tכp dεm fכ imyun sεl dεm.

difrεn kayn SCID dεm de, i dipכnt pan di kayn imyun sεl dεm we di pikin nכ de. Bɔt ɔl dɛn kayn tin ya rili siriɔs. Dɔktɔ dɛn go ɛksplen to yu us kayn yu pikin gɛt.

Aw SCID kɔmɔn?

SCID na rili wan tin we nɔ kin apin so ɔltɛm.Fɔ ɛgzampul, na Amɛrika, dis sik kin afɛkt lɛk wan pan ɛvri 50,000 pikin dɛn we dɛn kin bɔn ɛvri ia.

Bɔt we yu kam fɔ no se yu yon pikin gɛt sɔntin lɛk dis, aw i nɔ kin apin so ɔltɛm nɔ impɔtant, nɔto so? I rili de mek pɔsin fred, i de mek pɔsin in at pwɛl. We yu yɛri bɔt wan kɔndishɔn lɛk SCID, nɔto jɔs wan wɔd, i kin bi rial tin we gɛt big impak pan yu layf.

Wetin na di sayn dɛm fɔ SCID?

Sɔntɛnde, pikin we gɛt SCID nɔ kin gɛt ɛni patikyula sayn we de kɔmɔt na do fɔs. Bɔt di sayn dɛm wae kin kam pan pɔrsin wae gɛt dis sik na:

• Di pikin in wet nɔ de go ɔp fayn fayn wan.
• Dayarɛa we nɔ de dɔn.
• Sik dɛn we kin kam bɔku tɛm ɛn we kin rili bad.

Dis na bikɔs di pikin in imyun sistɛm rili wik, so i nɔ kin du bɛtɛ ɔ i nɔ kin du ɛnitin we i sik. Dis min se yu pikin kin sik pas ɔda pikin dɛn. Dɔn bak, if dɛn sik, dɛn sik kin tranga pas ɔda pipul dɛn.

Bebi dεm we gεt SCID de pan risk fכ gεt כl kayn infεkshכn. Dis inklud:

• Baktri infεkshכn dεm
• Vayral infɛkshɔn dɛn
• Infεkshכn dεm we dεn kin gεt fכ fכn
• Parasayt infεkshכn dεm

Pan ɔl we ɛni sik kin siriɔs, sɔm kayn infɛkshɔn dɛn de we kin apin mɔ to pikin dɛn we gɛt SCID:

• Yist infεkshכn lεk thrush כ diaper rash na di mכt εn tכng.
• Chikinpoks we de mek pɔsin gɛt sik.
• Blista dɛn we de rawnd di mɔt (Kol sɔl - hεpi simpul).
• Infεkshכn dεm na di yes.
• Nyumonia.
• Meningitis (bren fiva).

If yu smɔl pikin kɔntinyu fɔ gɛt dɛn sik ya, yu fɔ go to dɔktɔ wantɛm wantɛm.

Wetin kin mek pɔsin gɛt SCID?

SCID na wan sik we de mek pɔsin gɛt jɛnɛtiks . Dat min se na bikɔs wi jɛnɛtiks chenj , ɔ jɔs chenj na wi jin dɛn. Sayɛnsman dɛn dɔn no pas wan duzin dɛn kayn jɛnɛtik muteshɔn dɛn ya we kin mek pɔsin gɛt SCID.

Dɛn jɛnɛtik chenj ya kin kɔmɔt frɔm mama ɛn papa to pikin dɛn. dεn kin kכmכt frכm dεm as כ tosom rεsεsiv כ X-linked .

• כtosom rεsεsiv min se fכ di pikin fכ divεlכp dis kכndyushכn, i fכ gεt di mutated jin frכm dεn mama εn papa.
• X-linked SCID de kכz bay wan jεnεtik mכtεshכn na di X kromozom. I kin afɛkt bɔy pikin dɛn mɔ, bikɔs bɔy pikin dɛn gɛt wan X kromozom, we gyal pikin dɛn gɛt tu X kromozom.

Wetin na di prɔblɛm dɛn we kin kam wit SCID?

Di big ɛn denja kɔmplikeshɔn na we di pikin nɔ gɛt strɔng imyun sistɛm fɔ fɛt di infɛkshɔn. Bikɔs di pikin in bɔdi nɔ kin ebul fɔ fɛt ivin di smɔl infekshɔn, di risk fɔ gɛt siriɔs prɔblɛm dɛn kin bɔku pas ɔda pikin dɛn.

Ivin sik dɛn we nɔ kin siriɔs kin mek pikin we gɛt SCID gɛt prɔblɛm dɛn we kin mek i day.

If dɛn nɔ no di sik ɛn trit am we dɛn bɔn am, bɔku tɛm SCID kin kil pɔsin.

Aw dɔktɔ dɛn kin no if pɔsin gɛt SCID?

Dɔktɔ dɛn kin no SCID wit blɔd tɛst . Dɛn kin du dis tɛst bay we dɛn tek smɔl blɔd sɛmpul frɔm di pikin in il jɔs afta dɛn bɔn am.

Sɔm ɔspitul dɛn na Sri Lanka kin du dɛn kayn tɛst ya bak pan pikin dɛn we dɛn jɔs bɔn, mɔ if pɔsin na di famili dɔn gɛt dɛn kayn sik ya bifo. Dis na impɔtant tin, bikɔs if dɛn no di sik kwik kwik wan, dɛn kin bigin fɔ trit am bifo siriɔs infɛkshɔn kam.

Tritmɛnt de fɔ SCID?

Yɛs, tritmɛnt de fɔ SCID. di pikin dεm we gεt SCID nid fכ gεt stεm sεl transplant כ bon mכro transplant kwik kwik wan. Dis involv fɔ injekt wɛlbɔdi stem sɛl dɛn frɔm pɔsin we gi di pikin insay di pikin in bɔdi. dis hεlty sεl dεm de εp di pikin fכ bil nyu, strכng imyun sistεm we kin fכt infεkshכn.

• Di bɛst wan dɛn we de gi mɔni na di brɔda ɛn sista dɛn we dɛn bɔn ɛn we nɔ gɛt SCID.
• If da kayn pɔsin de nɔ de, dɔktɔ dɛn kin chɛk di stem sɛl rɛjista dɛn . Dis na databases of stem cells we di poblik don giv.

We yu de wet fɔ transplant stem sɛl, yu pikin kin nid ɔda tritmɛnt dɛn. Fɔ ɛgzampul:

• Antibayɔtiks - Fɔ mek yu nɔ gɛt baktriyal infɛkshɔn.
• Antivayral - Fɔ mek yu nɔ gɛt vayral infɛkshɔn.
• Antifungals - Fɔ mek yu nɔ gɛt fungal infɛkshɔn.
• IVIG infushכn - dεn kin du dis bay we dεn de gi antibodi dεm frכm כdasay na di bכdi fכ protεkt frכm infεkshכn.
• Jin tεrapi - Dis stil na εkspεriεns tritmεnt, bכt i kin bi saksesful fכ sכm kayn SCID.

Dis ɔl na tɛmporari tritmɛnt, SCID nɔ kin wɛl ɔl. di onli we fכ kכl SCID na tru wan stεm sεl transplant.

We dɛn de wet fɔ di stem sɛl transplant, i kin nid fɔ put di pikin na say we nɔ gɛt stɛriyl . Dis min se ɔltin we de go insay di pikin in rum fɔ gɛt sterilize. Dɛn kin du dis fɔ protɛkt di pikin frɔm jem.

sכm pipul dεn kכl SCID "bכbul pikin sik" biכs dεn de kip di pikin insay bכbul we de protεkt. Bɔt dis nem nɔ kɔrɛkt pan mɛrɛsin, ɛn i kin mek di pikin ɛn in mama ɛn papa fil bad. Yu nɔ du natin we nɔ rayt, ɛn yu pikin in wɛlbɔdi nɔto sɔntin we yu fɔ tek am natin.

Wetin a fɔ ɛkspɛkt if mi pikin gɛt SCID?

SCID na wan sik we kin kil pɔsin if dɛn nɔ trit am kwik. So, i rili impɔtant fɔ no if pikin gɛt SCID kwik kwik wan. Di kwik we dɔktɔ dɛn no se i gɛt di sik ɛn rifer di pikin fɔ mek dɛn transplant am stem sɛl, na di mɔ di chans fɔ sev di pikin in layf go bɛtɛ.

Sɔntɛm yu nɔ go ebul fɔ ol ɛn kɔt yu pikin lɛk aw yu go want. If yu pikin de na say we nɔ gɛt stɛrilɛs ɛn we nɔ de nia ɔda pipul dɛn, yu go gɛt fɔ fala strikt lɔ dɛn bak bɔt aw fɔ klin fɔ protɛkt yu pikin frɔm jem. Di dɔktɔ dɛn go ɛksplen ɔl dis to yu. Dɛn go tɛl yu bak wetin fɔ ɛkspɛkt bifo ɛn afta di stem sɛl transplant.

Wetin na di layf we pikin we gɛt SCID kin liv?

If dɛn nɔ gɛt tritmɛnt, di pikin dɛn we gɛt SCID kin day insay wan ɔ tu ia. Bɔt pikin dɛn we gɛt fayn fayn stem sɛl transplant kin liv nɔmal layf. Wae dɛn bɔdi dɔn gɛt strɔng, kɔmplit imyun sistɛm, bɔku tɛm dɛn nɔ kin gɛt prɔblɛm dɛn we kin de fɔ lɔng tɛm.

Yu tink se dɛn kin mek dɛn nɔ gɛt SCID?

SCID na bikɔs ɔf di jɛnɛtik muteshɔn we wi nɔ ebul fɔ kɔntrol, so natin nɔ de we wi go du fɔ mek i nɔ apin. If yu gɛt famili histri bɔt dis jenɛtik sik, tɔk to yu dɔktɔ bɔt fɔ gɛt jenɛtik kɔyl bifo yu bɔn pikin.

Ustɛm a fɔ go to dɔktɔ?

• If yu pikin kin sik bɔku tɛm, ɔ sho siriɔs sayn dɛn we i sik, go to dɔktɔ wantɛm wantɛm.
• If yu dɔn no se yu pikin gɛt SCID, tɛl yu dɔktɔ wantɛm wantɛm if yu notis ɛni chenj na yu pikin in wɛlbɔdi (e.g., fiva, kɔf, dayarɛa). Bikɔs yu pikin in bɔdi nɔ go ebul fɔ fɛt di sik dɛn fɔ insɛf, i go fayn fɔ gi am antibayɔtik ɔ ɔda mɛrɛsin wantɛm wantɛm.

Us kwɛstyɔn dɛn a fɔ aks mi dɔktɔ?

Na nɔmal tin fɔ fil bad ɛn shɔk we yu kam fɔ no se yu pikin gɛt SCID. Bɔt nɔ fred fɔ aks yu dɔktɔ ɛni kwɛstyɔn we yu gɛt. I impɔtant fɔ mek yu no klia wan bɔt ɔltin dis tɛm. Yu kin aks kwɛstyɔn dɛn lɛk:

• Mi pikin gɛt SCID ɔ ɔda sik we de mek i nɔ ebul fɔ fɛt di sik?
• Yu tink se dɛn go nid fɔ kip mi pikin na say we nɔ gɛt stɛrilɛs?
• Ustɛm mi pikin go nid fɔ transplant stem sɛl?
• Us chenj ɔ sayn dɛn we a fɔ no mɔ bɔt pan mi pikin?

Mɛmba se i rili impɔtant fɔ plan fɔ transplant stem sɛl fɔ yu pikin kwik kwik wan. Dɔn bak, yu gɛt rayt fɔ ɔndastand ɔl wetin de apin. Di dɔktɔ dɛn go ɛksplen ɔltin to yu ɛn tɛl yu wetin fɔ ɛkspɛkt.

Fɔ dɔn, mɛsej we yu kin kɛr go na os:

SCID (Severe Combined Immunodeficiency) na siriɔs ɛn frayd sik. Bɔt fɔ no di pikin kwik kwik wan, fɔ go to dɔktɔ jɔs lɛk aw i de sho se i gɛt di sik, ɛn fɔ gɛt di rayt tritmɛnt, dat kin sev in layf.

• Fɔ no di sik kwik kwik wan: I rili impɔtant fɔ no SCID tru di nyu bɔbɔ we dɛn de chɛk ɔ jɔs afta di sik sho.
• stεm sεl transplant: Dis na di men εn di mכst saksesful tritmεnt fכ SCID.
• Sef ɛnvayrɔmɛnt: I impɔtant fɔ protɛkt di pikin frɔm infɛkshɔn we dɛn de trit am.
• Mental trɛnk: Dis kin bi tranga tɛm as mama ɔ papa. Aks sɔpɔt frɔm dɔktɔ dɛn, famili, ɛn advaysa dɛn.

Nɔto yu wan de. Wit di advans na mεdikal sayns, pikin dεm wae gεt SCID kin liv hεlty, ful layf naw. Stay strɔng ɛn gɛt op.

` Imyuniti, SCID, sik dεm we pikin kin gεt, jεnεtik sik dεm, bon mכro transplant, imyun dεfisiεns, sik dεm we kin pas