Yu pikin kin gɛt spat lɛk dis? Mek wi lan bɔt Neonatal Lupus!

I nɔmal fɔ mek yu fred smɔl if yu notis sɔm rɛd spat dɛn wantɛm wantɛm na yu nyu bɔbɔ in bɔdi, ɔ if di dɔktɔ tɔk sɔntin bɔt aw yu pikin in at de bit. Sɔmtɛm dɛn tin ya kin kam wit wan sik we dɛn kɔl Neonatal Lupus. Tide, wi go tɔk bɔt dis smɔl smɔl, jɔs lɛk aw yu go tɔk to yu padi.

Wetin na Nionatal Lupus?

Fɔ tɔk am simpul wan, Nionatal Lupus na wan sik we kin afɛkt pikin we de na di bɛlɛ (fetus) ɔ jɔs afta dɛn bɔn am (bebi). Bɔku tɛm, i kin mek chenj dɛn fɔ sɔm tɛm, we nɔ kin du bad, lɛk we pɔsin in skin kin rɔsh. Dɛn tin ya kin go fɔ dɛnsɛf bifo di pikin ol wan ia. כltu, sכmtεm, Nyu bכbi Lupus kin afekt di pikin in at.

di komplikashכn we denja pas כl we kin apin na dis kes na ``autoimmune congenital heart block.`` dat min se dis ``Neonatal Lupus`` de mek di pikin in at nכ bit fayn fayn wan. Dis at blɔk kin mek pɔsin in layf de pan denja if i rili bad, bɔt bɔku tɛm dɛn kin trit am.

If dɛn dɔn no se yu pikin gɛt Nionatal Lupus, i impɔtant fɔ fala di instrɔkshɔn dɛn we di tim we de kia fɔ yu pikin gi gud gud wan. Dɛn go ɛksplen aw di sik go afɛkt yu pikin ɛn if dɛn go nid fɔ gɛt tritmɛnt.

Dis gɛt fɔ du wit big pipul dɛn lupus (Systemic Lupus Erythematosus - SLE)?

Nɔ, nɔ kɔnfyus di tu. Nyu bכbi Lupus nכto di sem sik wit Systemic Lupus Erythematosus (SLE), we wi kin kכl lupus. Na difrɛn kayn sik wit in yon kɔz ɛn tritmɛnt.

di nyu bכbi Lupus de kכz fכ sכm kayn antibodi dεm lεk anti-SSA, anti-SSB, εn anti-U1-RNP, we de pas frכm di mama to di pikin tru di plasεnta. Dɛn antibodi ya na rili prɔtin dɛn we kin mistek atak di wɛlbɔdi sɛl dɛn na wi bɔdi. bכku tεm, dεn antibodi dεm ya nכ de afekt di pikin we de gro na di bεlε. Bɔt sɔntɛnde, dɛn kin atak di pikin in wɛlbɔdi sɛl dɛn, mɔ di at sɛl dɛn.

Nyu bכbi Lupus de apin כnli pan pikin dεm we dεn mama gεt dεn spεsifi k antibodi dεm ya. Dis kin min se di mama gɛt ɔtoimyun sik. Fɔ ɛgzampul, Sjögren’s syndrome, SLE, ɔ miks kɔnɛktiv tisu sik. Bɔt sɔmtɛm dɛn antibodi ya kin de na di bɔdi we nɔ gɛt ɛni sayn. Sɔntɛnde, Nionatal Lupus kin bi di fɔs sayn we de sho se di mama gɛt wan ɔ mɔ pan dɛn antibodi ya ɛn i kin gɛt wan aktif ɔtoimyun sik tumara bambay.

Mɛmba se if yu gɛt ɔtoimyun sik, i nɔ min se yu pikin go mɔs gɛt Nionatal Lupus. Infakt, i go mɔs bi se yu pikin nɔ go gɛt Nionatal Lupus. Bɔt, dis na sɔntin we yu fɔ no bɔt ɛn tɔk to yu dɔktɔ bɔt.

Aw kɔmɔn tin dis kin apin?

Neonatal Lupus nɔto tin we nɔ kin apin. di mכst siriכs komplikεshכn we i gεt, we na כtoimyun kכnεjital hat blכk, de afekt lεs dan 2% pan di pikin dεm we mama dεm bכn we positifu fכ antibodi dεm to anti-SSA, anti-SSB, כ anti-U1-RNP. Bɔt if yu bin dɔn gɛt ɔtoimmune congenital hat blɔk we yu bin gɛt bɛlɛ bifo, yu de pan big risk fɔ gɛt am bak we yu gɛt bɛlɛ afta dat.

Wetin na di sayn dɛm fɔ `(Neonatal Lupus)`?

Di sayn we de sho klia wan na di skin we de rɔsh. Dɛn kin si dis we dɛn bɔn am, ɔ i kin apin insay di fɔs mɔnt dɛn we i de liv. Dis rash na fɔ shɔt tɛm nɔmɔ ɛn i nɔ de du bad. I kin apia lɛk sɛkɔla ring wit wan ed we gɛt kɔlɔ (bɔku tɛm i kin rɛd). εvri ring gεt klia sεntr (i.e., nכmal skin kכla).

Yu go mɔs si dɛn lɛsin ya na yu pikin in skel ɛn in fes. Bɔt dɛn kin apia bak na di chɛst, an, ɛn leg. dis lεsin dεm sεm lεk dεn wan dεm we dεn si na wan kכndishכn we dεn kכl ``subacute cutaneous lupus.'' Na dat mek dεn kכl dεm ``neonatal lupus.''

Ɔda sayn dɛn de bak we kin apin fɔ sɔm tɛm ɛn we nɔ kin bad bak. Dɛn na:

• di rεd bכdi sεl lεvεl dεm we de dכn (anemia).
• di lכw lεvεl dεm fכ di pletlεt dεm (sεl dεm we de εp fכ blכd kכlכt) (thrombocytopenia).
• Lɔw wayt blɔd sɛl kɔnt (nyutropenia).
• di εlevεt liva εnzym lεvεl dεm.

כl dεn simptom dεm ya de dכn we dεn kכl di antibodi dεm frכm di mama kכmplit wan na di pikin in bכdi. Dɛn kin bɛtɛ bitwin 6 ɛn 9 mɔnt.

Nionatal Lupus ɛn At Blɔk

As wi bin dɔn tɔk, Nionatal Lupus kin mek wan siriɔs kɔmplikeshɔn we dɛn kɔl ɔtoimyun kɔnjɛnital at blɔk. Dis na prɔblɛm wit di pikin in at in ilɛktrik sistɛm. di pikin in at bit na di ilektrikal impuls dεm we de travul tru di at. insay Nionatal Lupus, di antibodi dεm we de kכmכt na di mama de atak wan grup fכ sεl dεm we de kכntro di ilektrikal aktiviti na di at, we dεn kכl di AV node.

sכmtεm dis kin כnli mek sכm sכm chenj dεm na di pikin in at rεt (fכs כ sεkכn digri at blכk). Dɛn tin ya kin sɔlv afta dɛn bɔn am. Bɔt sɔm pikin dɛn kin gɛt tɔd digri at blɔk, ɔ kɔmplit at blɔk, bikɔs ɔf Nionatal Lupus.

dis na we di ilektrikal signal dεm we de kכmכt na di כp chεmba dεm na di at nכ ebul fכ pas to di lכw chεmba dεm. we dεn sayn dεm ya blכk kכmplit, di at de bit rεgulεr, we de mek i at fכ di pikin in at fכ pכmp inof bכdi to di bכdi. Tɔd digri at blɔk na di kayn we we kin rili bad. Sɔntɛnde, i kin kil pɔsin bifo ɔ afta dɛn bɔn am.

di at blכk kin divεlכp bitwin 18 εn 24 wiks we di bεlε de. Dɔktɔ dɛn kin no am we uman gɛt bɛlɛ bay we dɛn de lisin to di pikin in at bit. If di at rit slo pas aw yu bin de tink (dεn kכl am bradycardia), i kin bi sayn fכ di at blכk.

Wetin na di tin dɛm wae kin mek pɔrsin gɛt Neonatal Lupus?

as wi bin dכn tכk, di Nionatal Lupus de kכz fכ di antibodi dεm we de pas frכm di mama to di pikin tru di plasεnta. Risach pipul dεn dכn link dεn spεshal kayn antibodi dεm ya to Neonatal Lupus:

• `(Anti-Sjögren-syndrom-rilayt antijen A (anti-SSA/Ro))`
• `(Anti-Sjögren-syndrom-rilayt antijen B (anti-SSB/La))`
• `(Anti-U1 ribonuklyoprotein (anti-U1-RNP))`

dis `(antibodi)` dεm de fכn pan pipul dεm we gεt difrεn כtoimyun sik dεm, lεk `(Sjögren's syndrome)`, `(SLE)`, `(rheumatoid arthritis)` εn `(miks kכnektiv tisu sik)`. Bɔt dɛn `(antibodies)` ya kin de bak pan pipul dɛm wae nɔr gɛt ɛni sayn ɔr wae dɛn nɔr dɔn no se gɛt dis sik.

we dεn antibodi dεm ya go insay di pikin in bכdi, dεn kin mek chenj dεm fכ sכm tεm כ fכ tεm. Risach pipul dεm stil nכ כndastand gud gud wan aw dεn antibodi dεm ya de mek dεn chenj ya. Bɔt dɛn no se di chenj dɛn we rili siriɔs ɛn we go de sote go na di pikin in at .

we dεn go insay di at, dεn antibodi dεm ya de stat wan inflammatory prכsεs, we de mek di ska tisu fכm. dis ska tisu de blok di ilektrikal signal dεm, we de mek di pikin in at nכ de wok fayn fayn wan. If di bad tin apin, dis kin bi wɛlbɔdi prɔblɛm we uman gɛt bɛlɛ ɔ i kin mek i gɛt prɔblɛm dɛn we kin mek i day afta dɛn bɔn am.

Aw dɛn kin no dis sik ``Neonatal Lupus''?

Dɔktɔ dɛn kin no se i gɛt Nionatal Lupus we i gɛt bɛlɛ ɔ jɔs afta dɛn bɔn am. if dεn si se di pikin in at rεt slo pas aw dεn bin de tink, dεn go du fetal εkokadyografi. Dis na tɛst we sef, we nɔ de mek pɔsin fil pen, ɛn we nɔ de ambɔg pɔsin. i kin luk di strכkchכ εn di wok we di pikin in at de du.

dis `(fetal echocardiogram)` kin sho chenj dεm we de sho se `(Neonatal Lupus)`. If na so, yu dɔktɔ go tɛl yu bɔt aw di sik go tranga ɛn wetin fɔ ɛkspɛkt tumara bambay. Dɛn go chɛk yu blɔd bak fɔ si if dɛn spɛshal `(antibodies) dɛn de.`

Sɔntɛnde, di sayn dɛn we de sho se di pikin gɛt Nionatal Lupus, lɛk we di skin kin gɛt, kin jɔs apin afta dɛn bɔn di pikin. If dis apin, di mɛdikal tim go du wan fyzikal ɛgzam fɔ no ɔda tin dɛn we kin mek di lɛsin dɛn gɛt. Dɛn kin tɛst yu, yu pikin, ɔ una ɔl tu bak fɔ si if yu gɛt antibodi fɔ ɛp fɔ no if yu gɛt di sik.

Yu dɔktɔ go no se yu gɛt Nionatal Lupus if dɛn tu tin ya de:

• If yu ɛn/ɔ yu pikin na `(positiv)` fɔ `(anti-SSA)` ɛn/ɔ `(anti-SSB)` ɛn/ɔ `(anti-U1-RNP)`.

ɛn

• If yu pikin gɛt at le wan kɔnfyus simptom fɔ ``Neonatal Lupus''.

Aw dɛn kin trit Nionatal Lupus?

Di tritmɛnt dipen pan aw di sik kin tranga. Nɔ tritmɛnt nɔ nid fɔ de fɔ di skin lɛsin dɛn, di blɔd sɛl dɛn we nɔ de wok fayn, ɔ di liva ɛnzaym dɛn we dɔn bɔku. Bɔku tɛm, dɛn prɔblɛm ya kin sɔlv fɔ dɛnsɛf insay lɛs wan ia.

Bɔt pikin dɛn we dɛn bɔn wit at blɔk kin nid fɔ put pɔrmɛnt pacemaker we dɛn bɔn dɛn ɔ we dɛn smɔl. Dis na ɔpreshɔn we dɛn kin du fɔ put wan tin insay dɛn at fɔ ɛp dɛn fɔ bit fayn fayn wan. Yu pikin in mɛdikal tim go tɛl yu mɔ bɔt dis.

Sɔm risach dɔn sho se if yu tek sɔm mɛrɛsin dɛn we yu gɛt bɛlɛ, dat kin mek yu pikin nɔ gɛt at blɔk. If dɛn no se yu gɛt wan sik we dɛn kɔl ɔtoimyun sik, ɔ if yu tɛst fɔ sɔm antibodi dɛm, yu dɔktɔ kin tɛl yu fɔ tek wan mɛrɛsin we dɛn kɔl haydroksiklɔrokin we yu gɛt bɛlɛ. If yu du dat, i go ɛp fɔ protɛkt yu pikin frɔm di bad bad tin dɛn we de apin to di Nionatal Lupus.

Wetin na di prɔgnosis fɔ pikin dɛn we gɛt Nionatal Lupus?

di we aw yu pikin de si tin dipכnt pan aw Nionatal Lupus de afekt in bכdi. Fɔ pikin dɛm we gɛt ɔl di skin, liva, ɛn/ɔ blɔd abnɔmal, di lukin-grɔn kin rili fayn. Ɔltin fɔ kam bak to nɔmal bay 6 to 9 mɔnt.

Bɔt if at blɔk apin, di we aw pipul dɛn de si tin kin rili difrɛn. Sɔntɛnde, at blɔk kin kil pɔsin bifo ɔ afta dɛn bɔn am. Bɔku pikin dɛn we gɛt at blɔk go nid fɔ gɛt pɔrmɛnt pesmɛka we dɛn smɔl.

sכm nכmba fכ pikin dεm we gεt Nionatal Lupus kin leta divεlכp wan כtoimyun kכndyushכn lεk dis:

• Juvenil idiopatik at at sik
• Psoriasis we dɛn kɔl Psoriasis
• Autoimyun tayroyd sik
• Tayp 1 dayabitis

"Ɛvri pikin difrɛn. Nyu bɔn Lupus kin gɛt smɔl ɔ nɔ gɛt ɛni impak pan yu pikin in layf. Dɛn mɛdikal tim go gi yu mɔ ditil bɔt wetin fɔ ɛkspɛkt ɛn aw fɔ pripia."

Yu tink se dɛn kin ebul fɔ mek dɛn nɔ gɛt Neonatal Lupus?

no we nכ de fכ stכp di antibodi dεm fכ kכros di plasεnta we yu bεlε. Bɔt yu kin mek yu pikin in at nɔ pwɛl bad bad wan, ɔ yu kin plan bifo tɛm fɔ ɛni tritmɛnt we yu pikin go nid afta dɛn bɔn am. If yu tɛst pɔsitiv fɔ anti-SSA, anti-SSB, ɔ anti-U1-RNP, yu dɔktɔ kin tɛl yu fɔ du dɛn tin ya:

• If yu tek sɔm mɛrɛsin dɛn kwik kwik wan we yu gɛt bɛlɛ ɛn we yu gɛt bɛlɛ, dat kin ɛp fɔ protɛkt di pikin fɔ mek i nɔ gɛt at blɔk.
• di skrinin fכ hat blכk (fetal echocardiograms) frכm arawnd 16 wiks we di bεlε de.
• Fɔ wach aw di pikin in at de wok insay di fɔs mɔnt we i de liv. dis na fכ chεk fכ sayn dεm fכ hat blכk (if dεn nכ apia yet), biכs sכm pikin dεm nכ de sho nכ sayn te fכ wik afta dεn bכn dεm.

Ustɛm a fɔ go to dɔktɔ?

I impɔtant fɔ fala di tɛst ɛn apɔntinmɛnt schedule we yu pikin in mɛdikal tim dɔn gi yu kɔrɛkt wan. Dɛn go tɛl yu ɔmɔs tɛm fɔ briŋ yu pikin kam fɔ mek dɛn chɛk am ɛn fɔ mek dɛn fala yu.

I impɔtant bak fɔ tek kia ɔf yu wɛlbɔdi biznɛs. If yu tɛst pɔsitiv fɔ sɔm antibodi dɛm bɔt yu nɔ gɛt sayn ɔ simptom dɛm fɔ ɔtoimyun sik, yu dɔktɔ kin rifer yu to rεumatɔlɔjis, dɔktɔ we spɛshal pan jɔyn pen ɛn sik dɛm we gɛt fɔ du wit am. Dis na bikɔs chans de fɔ mek yu gɛt wan aktif ɔtoimyun sik insay di nɛks sɔm ia. Yu dɔktɔ go ɛksplen wetin yu go ɛkspɛkt ɛn wach yu gud gud wan so dat yu go gɛt tritmɛnt wantɛm wantɛm.

Us kwɛstyɔn dɛn a fɔ aks mi pikin in dɔktɔ?

Dɛn kwɛstyɔn ya kin ɛp yu fɔ no mɔ bɔt Nionatal Lupus afta yu dɔn no se yu gɛt di sik:

• Aw Nionatal Lupus go afɛkt mi bɛlɛ/mi pikin?
• Us tritmɛnt opshɔn dɛn de?
• Wetin na di prɔgnosis?
• Wetin na di chans fɔ mek Nionatal Lupus afɛkt uman we gɛt bɛlɛ tumara bambay?

big pipul dεn kin gεt ``Neonatal Lupus''?

Nɔ, Nionatal Lupus nɔto diagnosis fɔ big pipul dɛn. כnli fεtus εn bebi dεm dεn kin no am. Nionatal Lupus nɔto di sem wit big pipul dɛn lupus.

Systemic Lupus Erythematosus (SLE), we wi kin kɔl lupus, na wan ɔtoimyun kɔndishɔn we kin afɛkt pikin ɛn big pipul dɛn. SLE na sistɛm, we min se i de afɛkt di wan ol bɔdi ɛn i nid fɔ gɛt tritmɛnt ɛn monitarin fɔ ɔl in layf.

Nyu bכbi Lupus de כnli afekt di fכs mכnt dεm na di pikin in layf. I nɔ kin kam leta we i smɔl ɔ we i big.

Bɔt, Nionatal Lupus kin gɛt lɔng tɛm ifɛkt pan pɔsin in bɔdi, ivin if dɛn nɔ no am te afta dɛn bɔn am. Di prɔblɛm we siriɔs pas ɔl na di at blɔk, we kin nid fɔ gɛt pesmɛka fɔ ɔl yu layf. Sɔm risach dɔn sho se pikin dɛn we gɛt Nionatal Lupus kin gɛt mɔ risk fɔ gɛt ɔtoimyun sik dɛn leta na layf.

If yu bin gɛt Nionatal Lupus we yu bin smɔl, tɔk to yu dɔktɔ fɔ no us kayn monitarin ɔ tɛst yu go nid as yu de ol.

We yu gɛt bɛlɛ ɛn gɛt nyu bɔbɔ diagnosis lɛk dis, i kin mek yu at pwɛl ɛn mek yu wɔri. I kin rili tranga fɔ nɔ no wetin go apin as yu bɛlɛ de go bifo. Natin nɔ bad fɔ tɛl yu mɛdikal tim bɔt wetin yu de fred ɛn wetin de mɔna yu. Dɛn go du ɔl wetin dɛn ebul fɔ ɛp yu fɔ ɔndastand wetin de apin ɛn wetin yu kin du fɔ ɛp yu fɔ gɛt wɛlbɔdi bɛlɛ.

If dεn no yu pikin afta dεn bכn am, dεn kin nid fכ de wach am tru di fכs mכnt fכ in layf fכ chεk aw in at de wok. Dɛn kin gɛt bak skin lɛsin dɛn we kin las fɔ sɔm mɔnt. Yu pikin in mɛdikal tim go ɛksplen wetin fɔ ɛkspɛkt ɛn gi sɔpɔt fɔ yu ɛn di wan ol famili.

Tin dɛn we wi nid fɔ mɛmba frɔm dis stori

Okay, so lɛ wi rikap sɔm pan di impɔtant tin dɛm bɔt Nionatal Lupus we wi bin tɔk bɔt:

• Nionatal Lupus na wan kכndyushכn we de apin to nyu bכbi pikin dεm bikoz fכ spεshal antibodi dεm we de pas frכm di mama to di pikin.
• Dis nɔto di sem wit lupus (SLE) we kin apin to big pipul dɛn.
• Bɔrku tɛm, de sik kin de fɔ sɔm tɛm ɛn nɔr kin du bad, lɛk wae pɔrsin gɛt sayn na in skin. Dɛn wan ya go wɛl insay 6-9 mɔnt.
• Bɔt sɔm pikin dɛn kin gɛt wan siriɔs sik we dɛn kɔl congenital heart block, we kin nid fɔ gɛt pacemaker.
• If di mama gɛt ɔtoimyun sik, ɔ if i gɛt spɛshal antibodi dɛm (anti-SSA, anti-SSB), i rili impɔtant fɔ tɔk bɔt dis wit di dɔktɔ we i gɛt bɛlɛ.
• Bɔku pikin dɛn kin wɛl kpatakpata frɔm dis sik. If at prɔblɛm kam, dɛn kin trit am.
• If yu gɛt ɛni kwɛstyɔn ɔ dawt, nɔ fred fɔ aks di dɔktɔ. Dɛn de de fɔ ɛp yu.

`Nyu bכbi Lupus, nyu bכn pikin dεm, bεlε sik dεm, at blכk, כtoimyuniti, mama in antibodi dεm, skin rεsh