Ingabe ingane yakho ithola amabala anjengalawa? Ake sifunde nge-Lupus Yezingane Ezisanda Kuzalwa!

Kuvamile ukuzizwa wesaba kancane uma ungazelele ubona amabala abomvu emzimbeni wosana lwakho, noma uma udokotela esho okuthile ngokushaya kwenhliziyo kwengane yakho. Ngezinye izikhathi lezi zinto zingabangelwa yisimo esibizwa ngokuthi i-Neonatal Lupus. Namuhla, sizoxoxa ngalokhu ngemininingwane eyengeziwe, njengoba nje ungakhuluma nomngane.

Kuyini i-Lupus Yezingane Ezisanda Kuzalwa?

Kalula nje, i-Neonatal Lupus yisimo esingathinta ingane esibelethweni (isisu) noma ngokushesha ngemva kokuzalwa (usana). Esikhathini esiningi, sibangela izinguquko zesikhashana, ezingenabungozi, njengokuqubuka kwesikhumba. Lokhu kuvame ukuphela ngokwako ngaphambi kokuba ingane ibe nonyaka ubudala. Kodwa-ke, ngezinye izikhathi i-Neonatal Lupus ingathinta inhliziyo yengane.

Inkinga eyingozi kakhulu engenzeka kulesi simo ``ukuvinjwa kwenhliziyo okuzalwa yi-autoimmune``. Okusho ukuthi, le ``Neonatal Lupus`` ivimbela inhliziyo yengane ukuthi ishaye kahle. Lokhu kuvinjwa kwenhliziyo kungaba yingozi empilweni uma kukubi kakhulu, kodwa kuvame ukwelashwa.

Uma ingane yakho itholakale ine-Lupus Yezinsana Ezisanda Kuzalwa, kubalulekile ukulandela imiyalelo yethimba lokunakekela ingane yakho ngokucophelela. Bazochaza ukuthi ukuxilongwa kuzoyithinta kanjani ingane yakho nokuthi ngabe ukwelashwa kuzodingeka yini.

Ingabe lokhu kuhlobene ne-lupus yabantu abadala (Systemic Lupus Erythematosus - SLE)?

Cha, ungadidanisi lokhu okubili. I-Lupus yosana olusanda kuzalwa ayisona isifo esifanayo ne-Systemic Lupus Erythematosus (SLE), esivame ukuyibiza ngokuthi i-lupus. Yisimo esihlukile esinezimbangela zaso kanye nokwelashwa kwaso.

I-Lupus yosana olusanda kuzalwa ibangelwa izinhlobo ezithile zama-antibodies, njenge-anti-SSA, anti-SSB, kanye ne-anti-U1-RNP, ezidluliselwa kusuka kumama ziye enganeni nge-placenta. Lawa ma-antibodies empeleni angamaphrotheni ahlasela ngephutha amaseli anempilo emzimbeni wethu. Esikhathini esiningi, la ma-antibodies awathinti ingane ekhula esibelethweni. Kodwa ngezinye izikhathi, angahlasela amaseli anempilo yomntwana, ikakhulukazi amaseli enhliziyo.

I-Lupus yezingane ezisanda kuzalwa yenzeka kuphela ezinganeni ezinomama abanalezi antibodies ezithile. Lokhu kuvame ukusho ukuthi umama unesifo sokuzivikela komzimba. Isibonelo, i-Sjögren's syndrome, i-SLE, noma isifo sezicubu ezixhumeneyo ezixubile. Kodwa-ke, ngezinye izikhathi la ma-antibodies angaba khona emzimbeni ngaphandle kwezimpawu. Kwezinye izimo, i-Lupus yezingane ezisanda kuzalwa ingaba uphawu lokuqala lokuthi umama une-antibody eyodwa noma ngaphezulu nokuthi angase abe nesifo sokuzivikela komzimba esisebenzayo esikhathini esizayo.

Khumbula, uma unesifo sokuzivikela komzimba, akusho ukuthi ingane yakho izokuba ne-Neonatal Lupus. Eqinisweni, kungenzeka kakhulu ukuthi ingane yakho ingakhuli ne-Neonatal Lupus. Kodwa, lokhu kuyinto okufanele uyiqaphele futhi ukhulume nodokotela wakho ngayo.

Sivame kangakanani lesi simo?

I-Lupus yokuzalwa kwengane ayivamile. Inkinga yayo enkulu kakhulu, ukuvimba kwenhliziyo okuzalwa ngokuzimela, ithinta izingane ezingaphansi kuka-2% ezizalwa omama abane-antibodies yokulwa ne-SSA, i-anti-SSB, noma i-anti-U1-RNP. Kodwa-ke, uma uke waba nokuvimba kwenhliziyo okuzalwa ngokuzimela ekukhulelweni kwangaphambilini, usengozini enkulu yokuba nakho futhi ekukhulelweni okulandelayo.

Ziyini izimpawu ze-`(I-Lupus Yengane Esanda Kuzalwa)`?

Uphawu olusobala kakhulu ukuqubuka kwesikhumba. Lokhu kungabonakala ekuzalweni, noma kungabonakala ezinyangeni ezimbalwa zokuqala zokuphila. Lokhu kuqubuka kungokwesikhashana futhi akunangozi. Kuvela njengendandatho eyindilinga enomphetho onombala (ngokuvamile obomvu). Indandatho ngayinye inesikhungo esicacile (okungukuthi, umbala wesikhumba ojwayelekile).

Cishe uzobona lezi zilonda ekhanda lengane yakho nasebusweni. Kodwa-ke, zingavela nasesifubeni, ezingalweni nasemilenzeni. Lezi zilonda zifana nalezo ezibonakala esimweni esibizwa ngokuthi "i-subacute cutaneous lupus." Yingakho zibizwa ngokuthi "i-neonatal lupus."

Kukhona nezinye izimpawu zesikhashana nezingenangozi. Lezi yizi:

• Ukwehla kwamazinga abomvu egazi (i-anemia).
• Amazinga aphansi ama-platelet (amaseli asiza ukujiya kwegazi) (thrombocytopenia).
• Inani eliphansi lamaseli amhlophe egazi (i-neutropenia).
• Amazinga aphezulu e-enzyme yesibindi.

Zonke lezi zimpawu ziyanyamalala lapho ama-antibodies avela kumama esuswa ngokuphelele emzimbeni wengane. Ngokuvamile ziyathuthuka phakathi kwezinyanga eziyi-6 neziyi-9 ubudala.

I-Lupus Yezingane Ezisanda Kuzalwa kanye Nokuvimba Kwenhliziyo

Njengoba sishilo ngaphambili, i-Neonatal Lupus ingabangela inkinga enkulu ebizwa ngokuthi i-autoimmune congenital heart block. Lena inkinga ohlelweni lukagesi lwenhliziyo yengane. Ukushaya kwenhliziyo kwengane kulawulwa yizinzwa zikagesi ezihamba enhliziyweni. Ku-Neonatal Lupus, ama-antibodies avela kumama ahlasela iqembu lamaseli alawula umsebenzi kagesi wenhliziyo, okuthiwa i-AV node.

Ngezinye izikhathi lokhu kubangela izinguquko ezincane kuphela ekushayeni kwenhliziyo yengane (ukuvinjwa kwenhliziyo kwesigaba sokuqala noma sesibili). Lokhu kungase kuphele ngemva kokuzalwa. Kodwa-ke, ezinye izingane zingaba nokuvinjwa kwenhliziyo kwesigaba sesithathu, noma ukuvinjwa kwenhliziyo okuphelele, ngenxa ye-Lupus Yezingane Ezisanda Kuzalwa.

Lokhu kwenzeka lapho izimpawu zikagesi ezivela emakamelweni aphezulu enhliziyo zingakwazi ukudlula ziye emakamelweni aphansi. Uma lezi zimpawu zivinjiwe ngokuphelele, inhliziyo ishaya ngokungajwayelekile, okwenza kube nzima ngenhliziyo yengane ukupompa igazi elanele emzimbeni. Ukuvinjwa kwenhliziyo kwesigaba sesithathu kuyindlela enzima kakhulu. Ngezinye izikhathi kungaba yingozi ngaphambi noma ngemva kokuzalwa.

Ukuvaleka kwenhliziyo kuvame ukukhula phakathi kwamasonto ayi-18 nama-24 okukhulelwa. Odokotela bangakubona ngesikhathi sokukhulelwa ngokulalela ukushaya kwenhliziyo komntwana. Uma ukushaya kwenhliziyo kuhamba kancane kunokulindelekile (okubizwa ngokuthi i-bradycardia), kungaba uphawu lokuvaleka kwenhliziyo.

Yiziphi izimbangela ze-Lupus ye-Neonatal?

Njengoba sishilo ngaphambili, i-Neonatal Lupus ibangelwa ama-antibodies asuka kumama aye enganeni nge-placenta. Abacwaningi baxhumanise lezi zinhlobo ezithile zama-antibodies ne-Neonatal Lupus:

• `(I-antigen A ehlobene ne-Anti-Sjögren's-syndrome (i-anti-SSA/Ro))`
• `(I-antigen B ehlobene ne-Anti-Sjögren's-syndrome (i-anti-SSB/La))`
• `(I-ribonucleoprotein elwa ne-U1 (i-anti-U1-RNP))`

Lawa `(ama-antibodies)` atholakala kubantu abanezifo ezahlukahlukene zokuzivikela komzimba, njenge-`(Sjögren's syndrome)`, `(SLE)`, `(rheumatoid arthritis)` kanye ne-`(mixed connective tissue disease)`. Kodwa-ke, lawa `(ama-antibodies)` angatholakala nakubantu abangenazo izimpawu noma abangakatholakali benalesi sifo.

Uma la ma-antibodies engena emzimbeni womntwana, angabangela izinguquko zesikhashana noma ezihlala njalo. Abacwaningi abakaqondi ngokugcwele ukuthi la ma-antibodies abangela kanjani lezi zinguquko. Kodwa bayazi ukuthi izinguquko ezinkulu nezihlala njalo zisenhliziyweni yomntwana .

Uma sezingaphakathi enhliziyweni, la ma-antibodies aqala inqubo yokuvuvukala, okuholela ekwakhekeni kwezicubu zesibazi. Lezi zicubu zesibazi zivimba izimpawu zikagesi, zivimbele inhliziyo yengane ukuthi isebenze kahle. Ezimweni ezimbi kakhulu, lokhu kungaba yingozi empilweni ngesikhathi sokukhulelwa noma kubangele izinkinga ezisongela impilo ngemva kokuzalwa.

Lesi sifo `(I-Lupus Yezingane Ezisanda Kuzalwa)` sitholakala kanjani?

Odokotela baxilonga i-Lupus yosana olusanda kuzalwa ngesikhathi sokukhulelwa noma ngokushesha ngemva kokuzalwa. Uma bebona ukuthi ukushaya kwenhliziyo komntwana kuhamba kancane kunalokho obekulindelwe, bazokwenza i-echocardiogram yengane esanda kuzalwa. Lokhu ukuhlolwa okuphephile, okungenabuhlungu, okungahlaseli. Kungabheka isakhiwo kanye nokusebenza kwenhliziyo yomntwana.

Lokhu `(i-echocardiogram yengane)` kungabonisa izinguquko ezisikisela `(i-Lupus Yengane Esanda Kuzalwa)`. Uma kunjalo, udokotela wakho uzokutshela ngobucayi besimo nokuthi yini ongayilindela esikhathini esizayo. Bazohlola negazi lakho ukuthi likhona yini lawo `(ama-antibodies)` akhethekile.

Ngezinye izikhathi, izimpawu ze-Neonatal Lupus, njengezilonda zesikhumba, zivela kuphela ngemva kokuzalwa komntwana. Uma lokhu kwenzeka, ithimba lezokwelapha lizokwenza ukuhlolwa ngokomzimba ukuze likhiphe ezinye izimbangela ezingaba khona zalezi zilonda. Bangase futhi bakuhlole wena, ingane yakho, noma nobabili ukuze bathole ama-antibodies ukusiza ekuxilongeni.

Udokotela wakho uzokuthola ukuthi une-Lupus ye-Neonatal uma zombili lezi zimo zikhona:

• Uma wena kanye/noma ingane yakho `(positive)` ye-`(anti-SSA)` kanye/noma `(anti-SSB)` kanye/noma `(anti-U1-RNP)`.

futhi

• Uma ingane yakho okungenani inophawu olulodwa oluqinisekisiwe lwe-"Neonatal Lupus".

Iphathwa kanjani i-Lupus yezingane ezisanda kuzalwa?

Ukwelashwa kuncike ebunzimeni besimo. Akukho ukwelashwa okudingekayo ngezilonda zesikhumba, inani lamaseli egazi elingajwayelekile, noma ama-enzyme esibindi aphezulu. Lezi zinkinga zivame ukuzixazulula zodwa esikhathini esingaphansi konyaka.

Kodwa-ke, izingane ezizalwa zinokuvimba kwenhliziyo kungadingeka zifakwe umshini wokusiza inhliziyo ukuba ishaye kahle ngesikhathi sokuzalwa noma ngesikhathi sobuntwana. Lena inqubo yokuhlinzwa yokufaka idivayisi ukusiza inhliziyo yazo ishaye kahle. Ithimba lezokwelapha lengane yakho lizokutshela okwengeziwe ngalokhu.

Ucwaningo oluthile lukhombisile ukuthi ukuthatha imithi ethile ngesikhathi sokukhulelwa kunganciphisa ingozi yokuba ingane yakho ibe nokuvinjwa kwenhliziyo. Uma unesifo sokuzivikela komzimba esitholakale sitholakale, noma uma uhlolwe ukuthi une-antibodies ethile, udokotela wakho angancoma ukuthi uthathe umuthi obizwa ngokuthi i-hydroxychloroquine ngesikhathi sokukhulelwa. Ukwenza kanjalo kungasiza ekuvikeleni ingane yakho emiphumeleni emibi kakhulu ye-Neonatal Lupus.

Iyini i-prognosis yezingane ezine-Lupus ezisanda kuzalwa?

Umbono wengane yakho uncike ekutheni i-Neonatal Lupus ithinta kanjani umzimba wayo. Kubantwana abanezinkinga zesikhumba, isibindi, kanye/noma igazi kuphela, umbono wabo muhle kakhulu. Konke kufanele kubuyele esimweni esijwayelekile ezinyangeni eziyi-6 kuya kweziyi-9.

Kodwa-ke, uma kwenzeka ukuvinjwa kwenhliziyo, isimo singahluka kakhulu. Ukuvinjwa kwenhliziyo ngezinye izikhathi kungaba yingozi ngaphambi noma ngemva kokuzalwa. Izingane eziningi ezine-heart block zizodinga i-pacemaker ehlala njalo ebuntwaneni.

Inani elincane lezingane ezine-Lupus Yezinsana Ezisanda Kuzalwa lingaba nesimo sokuzivikela komzimba esifana nalesi:

• I-arthritis ye-idiopathic yentsha
• I-Psoriasis
• Isifo se-thyroid esizivikela ngokuzenzakalelayo
• Isifo sikashukela sohlobo 1

"Ingane ngayinye ihlukile. I-Lupus esanda kuzalwa ingase ibe nomthelela omncane noma ingabi nomthelela nhlobo empilweni yengane yakho. Ithimba labo lezokwelapha lizokunikeza imininingwane eyengeziwe mayelana nokuthi yini ongayilindela nokuthi ungayilungiselela kanjani."

Ingabe i-Lupus yezingane ezisanda kuzalwa ingavinjelwa?

Ayikho indlela yokuvimba ama-antibodies ukuthi awele i-placenta ngenkathi ukhulelwe. Kodwa-ke, ungavimbela umonakalo omkhulu enhliziyweni yengane yakho, noma okungenani uhlele kusengaphambili noma yikuphi ukwelashwa ingane yakho engase ikudinge ngemva kokuzalwa. Uma uhlolwe ukuthi une-anti-SSA, anti-SSB, noma anti-U1-RNP, udokotela wakho angase ancome okulandelayo:

• Ukuthatha imithi ethile ekuqaleni kokukhulelwa kanye nangesikhathi sokukhulelwa kungasiza ekuvikeleni ingane ekuhlaselweni yinhliziyo.
• Ukuhlolwa kwenhliziyo evalekile (i-echocardiograms yengane) kusukela cishe emavikini ayi-16 okukhulelwa.
• Ukuqapha ukusebenza kwenhliziyo yengane phakathi nenyanga yokuqala yokuphila. Lokhu kwenzelwa ukuhlola izimpawu zokuvaleka kwenhliziyo (uma zingakabonakali), njengoba ezinye izingane zingabonisi zimpawu kuze kube amasonto ambalwa ngemva kokuzalwa.

Kufanele ngifune nini iseluleko sezokwelapha?

Kubalulekile ukulandela uhlelo lokuhlolwa kanye nesimiso sokuqokwa esinikezwe yithimba lezokwelapha lengane yakho ngqo. Bazokutshela ukuthi kufanele ulethe ingane yakho kangaki ukuze ihlolwe futhi ilandelwe.

Kubalulekile futhi ukunakekela impilo yakho. Uma utholakala une-antibodies ethile kodwa ungenazo izimpawu zesifo sokuzivikela komzimba, udokotela wakho angakudlulisela kudokotela wamathambo, udokotela ochwepheshe bezinhlungu zamalunga nezifo ezihlobene nawo. Lokhu kungenxa yokuthi kunethuba lokuthi ungaba nesifo sokuzivikela komzimba esisebenzayo eminyakeni embalwa ezayo. Udokotela wakho uzochaza ukuthi yini ongayilindela futhi akuqaphe eduze ukuze uthole ukwelashwa ngokushesha.

Yimiphi imibuzo okufanele ngiyibuze udokotela wengane yami?

Le mibuzo ingakusiza ukuthi ufunde kabanzi nge-Lupus Yezingane Ezisanda Kuzalwa ngemva kokuxilongwa:

• I-Lupus Yezingane Ezisanda Kuzalwa izokuthinta kanjani ukukhulelwa kwami/umntwana wami?
• Yiziphi izindlela zokwelapha ezikhona?
• Iyini iphrojekthi?
• Lingakanani ithuba lokuthi i-Neonatal Lupus izothinta ukukhulelwa kwesikhathi esizayo?

Ingabe abantu abadala bangaba ne-"Neonatal Lupus"?

Cha, i-Neonatal Lupus ayiyona inkinga yabantu abadala. Itholakala kuphela ezinganeni ezisanda kuzalwa kanye nasezinsaneni. I-Neonatal Lupus ayifani ne-lupus yabantu abadala.

I-Systemic Lupus Erythematosus (SLE), esivame ukuyibiza ngokuthi i-lupus, yisimo sokuzivikela komzimba esithinta kokubili izingane kanye nabantu abadala. I-SLE ithinta umzimba wonke futhi idinga ukwelashwa nokubhekwa impilo yonke.

I-Lupus yosana olusanda kuzalwa ithinta kuphela izinyanga zokuqala zokuphila komntwana. Ayikhuli kamuva ebuntwaneni noma ebudaleni.

Kodwa-ke, noma ngabe i-Neonatal Lupus ingatholakali kuze kube yilapho izalwa, ingaba nemiphumela yesikhathi eside emzimbeni womuntu. Inkinga enkulu kakhulu ukuvinjelwa kwenhliziyo, okungadinga i-pacemaker impilo yonke. Olunye ucwaningo lubonisa ukuthi izingane ezine-Neonatal Lupus zingase zibe sengozini enkulu yokuthola izifo zokuzivikela komzimba kamuva ekuphileni.

Uma ube ne-Neonatal Lupus useyingane, khuluma nodokotela wakho ukuze uthole ukuthi hlobo luni lokuqapha noma ukuhlolwa ongaludinga njengoba ukhula.

Uma ukhulelwe futhi uthola ukuxilongwa kwengane esanda kuzalwa kanje, kungaba nzima kakhulu futhi kukhathazeke. Kungaba nzima kakhulu ukungazi ukuthi kuzokwenzekani njengoba ukukhulelwa kwakho kuqhubeka. Akukho lutho olungalungile ngokwabelana ngokwesaba kwakho nokukhathazeka kwakho nethimba lakho lezokwelapha. Bazokwenza konke okusemandleni abo ukukusiza uqonde okwenzekayo nokuthi yini ongayenza ukuze bakusize ube nokukhulelwa okunempilo.

Uma ingane yakho itholakala ukuthi inalesi sifo ngemva kokuzalwa, kungase kudingeke ihlolwe phakathi nenyanga yokuqala yokuphila kwayo ukuze kuhlolwe ukusebenza kwenhliziyo yayo. Ingase futhi ibe nezilonda zesikhumba ezihlala izinyanga eziningana. Ithimba lezokwelapha lengane yakho lizochaza ukuthi yini ongayilindela futhi likunikeze ukwesekwa wena nomndeni wonke.

Izinto okudingeka sizikhumbule kule ndaba

Kulungile, ake siphinde sixoxe ngamanye amaqiniso abaluleke kakhulu nge-Lupus Yezinsana esikhulume ngawo:

• I-Lupus yosana olusanda kuzalwa yisimo esenzeka ezinganeni ezisanda kuzalwa ngenxa yama-antibodies akhethekile adluliselwa kusuka kumama kuya enganeni.
• Lokhu akufani ne-lupus (SLE) eyenzeka kubantu abadala.
• Esikhathini esiningi, izimpawu zingezesikhashana futhi azinangozi, njengezilonda zesikhumba. Lezi zizophola zingakapheli izinyanga ezingu-6-9.
• Kodwa-ke, ezinye izingane zingaba nesifo esibi esibizwa ngokuthi i-congenital heart block, esingadinga i-pacemaker.
• Uma umama enesifo sokuzivikela komzimba, noma uma enama-antibodies athile (anti-SSA, anti-SSB), kubaluleke kakhulu ukuxoxa ngalokhu nodokotela ngesikhathi sokukhulelwa.
• Iningi lezingane liyalulama ngokuphelele kulesi simo. Uma kuvela izinkinga zenhliziyo, zingelashwa.
• Uma unemibuzo noma ukungabaza, ungesabi ukubuza udokotela. Bakhona ukuzokusiza.

'I-Lupus yosana olusanda kuzalwa, izinsana ezisanda kuzalwa, izifo zezinsana, ukuvimba kwenhliziyo, ukuzivikela komzimba, ama-antibodies omama, ukuqubuka kwesikhumba