Ngaba umntwana wakho uhlala efumana umkhuhlane? Ngaba uyaphola emva komkhuhlane iintsuku ezimbalwa, aze aphinde afumane umkhuhlane emva kweentsuku ezimbalwa? Usenokuba uzibuza ukuba kutheni oku kwenzeka ngaphandle kwentsholongwane okanye usulelo lwebhaktheriya. Oku kusenokuba kungenxa yemeko engaqhelekanga ebizwa ngokuba yi-SAIDs (Systemic Autoinflammatory Diseases) , abantu abaninzi abangazange bayive. Ungakhathazeki, masithethe ngayo ngokulula kwaye siqonde yonke into.
Zithini ii-SAID? Masiziqonde ngokulula.
Ngamafutshane, ii-SAID liqela lezifo ezibangela umkhuhlane ophindaphindayo, ongapheliyo ngaphandle kosulelo (njengeentsholongwane okanye iibhaktheriya). Isizathu soku kukungasebenzi kakuhle kwenkqubo yomzimba yokuzikhusela yomntwana wethu. Oku kwakubizwa ngokuba yi-'Periodic Fever Syndromes' ngaphambili.
Ngoku usenokuba uyazibuza, ingaba esi sisifo 'esikhusela umzimba'? Sihlala sisiva ngezifo ezikhusela umzimba ezifana neRheumatoid Arthritis okanye iLupus. Hayi, oku kwahlukile.
Khawucinge ukuba sinomkhosi wokhuselo ngaphakathi emzimbeni wethu, inkqubo yethu yokuzikhusela. Lo mkhosi unezinxalenye ezimbini eziphambili:
1. Inkqubo Yokuzikhusela Engokwemvelo: Lo ngumkhosi esizalwa nawo, kwaye ngowokuqala ukuhlasela nayiphi na intsholongwane.
2. Inkqubo Yokuzikhusela Ekwaziyo Ukuzikhusela: Lo ngumkhosi oqeqeshwe ngokukodwa ukulwa neentsholongwane ezahlukeneyo njengoko sikhula.
Kwi-SAIDs, ingxaki ikwinkqubo yomzimba yokuzikhusela . Loo nkqubo yomzimba yokuzikhusela iyaphazamiseka ize iqalise umlo emzimbeni ngaphandle kotshaba. Isiphumo salo mlo kukudumba emzimbeni kunye nomkhuhlane.
Kodwa kwizifo ezibangelwa kukuzikhusela komzimba esithethe ngazo, ingxaki ikumkhosi okwaziyo ukuziqhelanisa nomzimba oqeqeshwayo kamva. Loo mkhosi awukwazi ukubona iiseli ezilungileyo emzimbeni wawo uze uqale ukuzihlasela.
Ii-SAID zinqabile kakhulu kunezifo ezihlasela umzimba. Zidla ngokubangelwa zizizathu zemfuza , oko kuthetha ukuba zizuzwe njengelifa. Ezi mpawu zihlala ziqala xa umntwana esemncinci kakhulu , njengakwixesha lobuntwana okanye lobuntwana. Umntwana ngequbuliso uba nesiganeko okanye uhlaselo lokugula olunomkhuhlane kunye nezinye iimpawu, ezihlala ziphela kwiintsuku ezimbalwa. Umntwana unokuba sempilweni ngokupheleleyo xa engaguli. Nangona kungekho nyango, kukho unyango olusebenzayo olunokulawula iimpawu.
Ziziphi iintlobo eziphambili ze-SAIDs?
Abaphandi bafumanise malunga neentlobo ezingama-60 ze-SAIDs ukuza kuthi ga ngoku, kwaye iintlobo ezintsha zifunyanwa rhoqo. Nazi ezinye zezona ntlobo zixhaphakileyo.
| Igama lesifo (Uhlobo lwe-SAID) | Intshayelelo emfutshane |
|---|---|
| Umkhuhlane weMeditera wosapho (FMF) | Olu lolona hlobo luqhelekileyo lwe-SAID echongiweyo ngokwezakhi zofuzo, ebangela ukudumba okubuhlungu esiswini, esifubeni, nasemalungeni. |
| Umkhuhlane oQhelekileyo, i-Aphthous-Stomatitis, i-Pharyngitis, i-Adenitis (PFAPA) | Iqala kubantwana abancinci, ingakumbi ngaphambi kokuba bafikelele kwiminyaka emi-4 ubudala. Iimpawu ezifana nomphimbo obuhlungu, izilonda zomlomo, kunye nokudumba kwamadlala entanyeni kuza nomkhuhlane. Idla ngokuphela emva kweminyaka eli-10 ubudala. |
| Isifo sePeriodic Syndrome seTumor Necrosis Factor Receptor-Associated Periodic Syndrome (TRAPS) | Oku kunokuqala ebuntwaneni okanye nakwiminyaka yokufikisa. |
| Ukunqongophala kwe-Mevalonate Kinase (MKD) | Oku kudla ngokuqala ngaphambi kokuba umntwana abe nonyaka omnye ubudala. |
| Izifo Ezibangelwa Kukuvuvukala Okuzichaphazelayo ze-NLRP3 (CAPS) | Oku ngokwenene kukudibanisa izifo ezintathu ezahlukeneyo. |
| ISifo sokuQala kwabantu abadala (AOSD) | Njengoko igama lisitsho, esi sisifo esiqala xa umntu emdala. |
| Isifo sikaBlau | Oku kwenzeka rhoqo kubantwana abangaphantsi kweminyaka emi-4 ubudala. Kuchaphazela kakhulu ulusu, amehlo kunye namalungu. |
Ziziphi iimpawu eziqhelekileyo zezi zifo?
Uphawu oluphambili noluqhelekileyo lwe-SAIDs ngumkhuhlane ophindaphindayo . Nangona kunjalo, ukongeza kumkhuhlane, ezinye iimpawu zinokuvela kuxhomekeke kuhlobo lwesifo.
Into ebalulekileyo kukuba ezi mpawu zenzeka kuphela ngexesha lokugula. Xa elo xesha liphelile, umntwana unokuba sempilweni ngokupheleleyo ngaphandle kweempawu.
| Igama lesifo (Uhlobo lwe-SAID) | Iimpawu ekufuneka uzijonge |
|---|---|
| I-FMF | Intlungu ebuhlungu esiswini, esifubeni, nasemalungeni. Izilonda zesikhumba emilenzeni esezantsi okanye emaqatheni. |
| I-PFAPA | Umphimbo obuhlungu, izilonda emlonyeni, ii-lymph nodes ezivuvukileyo entanyeni. |
| IMIGXA | Umzimba uziva ubanda kwaye uqhaqhazela. Kukho iintlungu kwimisipha yomzimba, ingakumbi esiqwini nasezingalweni. Amabala abomvu abuhlungu anokuvela emzimbeni wonke. |
| I-MKD | Umzimba uziva ubanda kwaye uqhaqhazela, unentloko ebuhlungu, isisu esibuhlungu, ukungabi namdla wokutya, kunye neempawu ezifana nezo zomkhuhlane oqhelekileyo. |
| Izifo ze-NLRP3 | Ukurhawuzelela kwesikhumba, iintloko ezibuhlungu, ukudinwa, iintlungu zamalungu, kunye nosulelo lwamehlo (conjunctivitis). |
| Isifo sikaBlau | Izilonda zesikhumba ezingalweni zomntwana, emilenzeni, okanye esiqwini. Intlungu yamalungu kunye nentlungu yamehlo. |
Kutheni ezi zifo zenzeka? Zithini izizathu?
Njengoko besitshilo ngaphambili, ii-SAID ezininzi zizifo zemfuza . Oku kuthetha ukuba ezi zifo zibangelwa kukuguquka (utshintsho) kwimfuza ethile.
| Igama lesifo (Uhlobo lwe-SAID) | I-Associated Gene |
|---|---|
| I-FMF | I-MEFV gene |
| I-PFAPA | Isizathu esichanekileyo asikafunyanwa. |
| IMIGXA | I-gene ye-TNFRSF1A |
| I-MKD | I-MVK gene |
| Izifo ze-NLRP3 | I-NLRP3 gene |
| I-AOSD | Isizathu esichanekileyo asikafunyanwa. |
| Isifo sikaBlau | I-gene ye-NOD2 |
Yintoni enokwenzeka ukuba unyango olufanelekileyo alufumaneki?
Le yingxaki ebaluleke kakhulu. Kubalulekile ukulawula le meko ngokuthatha unyango olufanelekileyo. Kuba, ukuba kukho ukudumba okuqhubekayo emzimbeni okunje, kunokukhokelela kwimeko ebizwa ngokuba yi -Amyloidosis . Ngamafutshane, uhlobo oluthile lweproteni lunokufakwa kwizintso zethu, nto leyo ebangela umonakalo ongunaphakade kwizintso. Ke ngoko, kubaluleke kakhulu ukufumanisa isifo nokusinyanga ngokukhawuleza.
Ugqirha uxilonga njani esi sifo?
Inyaniso kukuba, ukufumanisa i-SAIDs kunokuba nzima kancinci kuba iimpawu zinokufana nezezinye izifo ezinzulu, ezifana ne-lupus.
Ngoko ke, eyona nto ibalulekileyo kukubona ugqirha ogxile kwezi ntlobo zezifo. Ugqirha ogxile kwizifo ezinxulumene namalungu kunye nenkqubo yomzimba yokuzikhusela ubizwa ngokuba yiRheumatologist .
Ugqirha wakho uza kuqwalasela izinto ezininzi ukuze enze uxilongo. Kusenokwenzeka ukuba uya kubuza ngeempawu zomntwana wakho kunye nokuba kukho imbali yosapho yale meko. Ugqirha wakho unokurhanela ii-SAID, ingakumbi ukuba:
- Ukuba umntwana usoloko ekhwehlela.
- Ukuba kukho nabani na kusapho oye waba nezigulo ezifana nomkhuhlane eziphindaphindayo ngolu hlobo.
- Ekubeni ezi zifo zixhaphakile phakathi kwamanye amaqela eentlanga, oko kuyaqwalaselwa.
Zeziphi iimvavanyo ezenziwayo?
Ugqirha angacebisa iimvavanyo ezininzi ukuqinisekisa isifo.
- Uvavanyo lwegazi (Uvavanyo lwelebhu): Uvavanyo olufana ne -C-reactive protein (CRP) kunye ne-CBC (Full Blood Count) lunokujonga ukudumba emzimbeni. La manqanaba ayanda ngexesha lokugula aze abuyele kumanqanaba aqhelekileyo xa umzimba uphilile.
- Uvavanyo lomchamo: Uvavanyo lomchamo lujonga amanqanaba aphezulu eeprotheyini kumchamo. Kwezinye izifo, ezifana ne-MKD, uvavanyo lomchamo lunokufumanisa ii-asidi ezithile.
- Uvavanyo lwemfuza: Olu vavanyo lunokubona utshintsho lwemfuza. Nangona kunjalo, ngamanye amaxesha, umntwana usenokuba ne-SAID kodwa uvavanyo lwemfuza lusenokungayiboni. Ke ngoko, nokuba iziphumo zovavanyo azibonisi ukuba isifo sikhona, akunakutshiwo ngokupheleleyo ukuba isifo asikho.
Zithini iindlela zonyango zoku?
Unyango lwe-SAIDs luxhomekeke kuhlobo kunye nobunzima besifo. Nangona ezi zifo zingenakunyangwa ngokupheleleyo, amayeza anokuzilawula kakhulu iimpawu.
- I-FMF: Kusetyenziswa iyeza elibizwa ngokuba yiColchicine koku. Linciphisa ukudumba emzimbeni. Ukuba elo yeza alisebenzi kumntwana, angasebenzisa amayeza afana neCanakinumab .
- I-PFAPA: Ii-steroids ezifana ne -Prednisone zinokunikwa ixesha elifutshane ukunciphisa ngokukhawuleza ixesha lokugula.
- IMIGXA: I-CanakinumabEli yeza lisebenza kakuhle kakhulu. Kwakhona, kusetyenziswa amayeza okulwa nokuvuvukala afana ne -glucocorticoids .
- I-MKD: Iyeza iCanakinumab liyasebenza nakule nto. Ngexesha lokugula, ii-NSAID (iipilisi zokunciphisa iintlungu) okanye ii-steroids zinokunceda.
- Izifo ze-NLRP3: Amayeza okuguqula amasosha omzimba afana neCanakinumab , iRilonacept , kunye neAnakinra asetyenziswa ngempumelelo koku.
- I-Blau Syndrome: Ngokuxhomekeke kwiimpawu, amayeza okunciphisa amasosha omzimba, amayeza okuthintela i-TNF, kunye namayeza asetyenziswa emehlweni angasetyenziswa.
Ngaba le meko iza kunyangwa ngokupheleleyo?
Ezinye ii-SAIDs zihlala ubomi bonke. Nangona kunjalo, ezinye, njenge-PFAPA, zinokuphela zodwa njengoko umntwana ekhula. Nangona ziyimeko yobomi bonke, ukuxhaphaka kokugula kunye nobunzima beempawu kunokuncipha ngokuhamba kwexesha. Ugqirha wakho uza kukunika iinkcukacha ezithile malunga nemeko yomntwana wakho.
Ukunyamekela umntwana onesi sifo kunokuba nzima. Kodwa ngoncedo lweengcali ezifanelekileyo, ungazilawula iimpawu zomntwana wakho kwaye umnike ubuntwana obuhle kangangoko.
Umyalezo Wokuya Ekhaya
- Ukuba umntwana wakho usoloko eba nefiva ngaphandle kwesizathu esicacileyo, musa ukumtyeshela nje uze ubone ugqirha ngoko nangoko.
- Ii-SAID liqela lezifo ezingaqhelekanga ezibangelwa yingxaki ekwindawo engaphakathi kwenkqubo yomzimba yokuzikhusela.
- Ezi azizozifo ezosulelayo; zihlala zibangelwa zizinto ezibangela ufuzo.
- Kubaluleke kakhulu ukubonana nogqirha wezifo zamathambo (ugqirha ogxile kumalungu kunye nenkqubo yomzimba yokuzikhusela) ukuze afumane isifo ngokuchanekileyo.
- Nangona ezi zingenakunyangwa ngokupheleleyo, amayeza anokunceda ukulawula iimpawu aze akuvumele ukuba uphile ubomi obuqhelekileyo.
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