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Kunjani ukukhulisa umntwana one-juvenile idiopathic arthritis (JIA)

Kunjani ukukhulisa umntwana one-juvenile idiopathic arthritis (JIA)Ekuhlaleni

Tokokuqala intombi yam yayihleli kwi-MRI, yayikukujonga ukuqinisekisa ukuba akukho nto ikhathazayo entlokweni yakhe. Lawo ngamazwi awasetyenziswa ngugqirha wakhe.





Ndayazi into awayeyithetha — babekhangela amathumba. Kodwa wawathetha kancinci kancinci kangangoko anako, uncumo ebusweni bakhe, ezama ukundigcina ndizolile nanjengoko sobabini sisazi ukuba kukho undonakele.



Ukukhangela iimpendulo

Intombi yam ibikhalaza ngentamo yayo iveki yonke. Kubusuku obudlulileyo, ezo zikhalazo bezivele zangxola zehla iinyembezi, zindishukumisele ekubeni ndimsuse phantsi ndimleqise kwigumbi likaxakeka. Ngosuku olulandelayo, wayetsala umlenze wakhe wasekunene ngasemva. Intamo yakhe yayiqinile. I-Meningitis (inkxalabo yam yokuqala) yayikhutshiwe, kwaye ngoku kukho le MRI-yenzeka ngoko nangoko.

Naleyo ibuye yacaca. Ngexesha lokumka kwethu esibhedlele, intombi yam yayibonakala ukuba ichache. Intsholongwane engaqhelekanga, ugqirha wakhe uqikelele. Kwaye sobabini sinethemba lokuba wayenyanisile.

Kodwa yaphinda yenzeka kwakhona.



Kwisithuba seenyanga ezimbalwa ezizayo, intombi yam yatyhalwa kwaye yaqhutywa amaxesha amaninzi. Wabonwa ziingcali kwaye wavavanywa kuyo yonke into ukusuka kwi-leukemia ukuya kwi-juvenile idiopathic arthritis (JIA).

Yayingowokugqibela owenza ezona ngqondo. Ngeli xesha, isihlahla sentombi yam naso besesivalekile ngokupheleleyo. Kwaye okwangoku, bekukho izinto malunga nokunikezelwa kwakhe ziingcali ze-rheumatologists ezithi azidibananga. Bayalela enye iMRI kwaye bandixelela ukuba oko akubonisi zimpawu ziqinisekileyo zesifo samathambo, baya kumthumela kwi-neurology.

Iimpawu zentsha ye-idiopathic arthritis

Iimpawu eziqhelekileyo zeJIA zibandakanya:



  • Intlungu edibeneyo, ngakumbi kusasa okanye emva kokulala
  • Ukudumba okuhlangeneyo kuhlala kuboniswa emadolweni, esinqeni, engqinibeni, okanye emagxeni
  • Ukuqina okunokuthi kuboniswe njengokuqhwalela okanye ubungqongqo
  • Umkhuhlane ophezulu
  • I-lymph nodes ezidumbileyo
  • Irhashalala ejikeleze umzimba

Kuya kufuneka uthathe umntwana wakho uye kumboneleli wokhathalelo lwempilo kuvavanyo lomzimba olucokisekileyo ukuba unayo nayiphi na le mpawu ihlala ixesha elide kuneveki. Ugqirha unokuyalela kuvavanyo lwegazi okanye iX-reyi ukuze akhuphe ezinye izifo ezizimela kunye neempawu ezifanayo.

Ukufumana isifo sokuqaqanjelwa sisifo samathambo kulutsha

Ngombulelo, kwimeko yentombi yam, ukuba i-MRI inike ubungqina besifo samathambo. Ndithi enkosi kuphela kuba ezinye iindlela bezinzima kakhulu-ezinye ziziphumo ezinokubakho andithandi nokucinga ngazo ngoku. Ngelixa ndingazange ndive nge-JIA ngaphambi kokubandezeleka kwentombi yam, kwaye ndingazange ndiqonde nokuba abantwana banokufumana isifo samathambo konke konke, oku kubonakala ngathi kuyalawuleka. Emva kwayo yonke loo nto, uninzi lwabantu lujongana ne-arthritis, akunjalo?

Le yayiyinkqubo yam yokucinga ubuncinci. Kodwa emva koko ndafunda ngakumbi malunga nokubandakanywa yiJIA; ibizothetha ntoni ngobomi bam bonke bentombi yam.



Yintoni i-juvenile idiopathic arthritis?

I-juvenile idiopathic arthritis lolona hlobo luqhelekileyo lwe-arthritis ebantwaneni nakwishumi elivisayo, utsho ULeann Poston , MD, ugqirha onelayisensi owayekade ewenza amayeza abantwana kwaye ngoku unegalelo kwi-Ikon Health. I-JIA yaziwa ngaphambili njenge-juvenile rheumatoid arthritis (JRA). Sisifo sokuzimela, nto leyo ethetha ukuba kukwiklasi yokuphazamiseka apho iiseli zamajoni omzimba zinobunzima ekuchazeni umahluko phakathi kweeseli okanye iiseli ezenza umntu kunye non-self okanye abahlaseli.

Ngokwemigaqo ye-layman: Amajoni omzimba ahlasela amalungu.



Ngaba i-juvenile idiopathic arthritis iyahamba?

Nazi Iindidi ezisixhenxe zeJIA , ngalinye limele amanqanaba ohlukeneyo obukhali:

  1. Inkqubo yeJIA
  2. Oligoarthritis
  3. I-Polyarticular arthritis, i-rheumatoid factor negative
  4. Isifo samathambo esine-polyarticular, isifo samathambo
  5. Isifo samathambo
  6. Isifo samathambo esinxulumene ne-Enthesitis
  7. Isifo samathambo esingafaniyo

Intombi yam iye yafunyaniswa ukuba inohlobo lwe-JIA ekuthiwa yi-polyarticular JIA, nto leyo ethetha ukuba inamalungu angaphezu kwesihlanu abandakanyekayo (sikhe sayeka ukubala onke amalunga omzimba achaphazelekayo kweli nqanaba, kuninzi nje ukubandakanyeka kakhulu ukugcina umkhondo). Uhlobo lwayo oluncinci kunokuba lukhule luphume-kuwo onke amathuba, iya kuba nesifo samathambo ubomi bayo bonke.



I-JIA sisifo esinganyangekiyo, esinganyangekiyo. Nangona kunjalo, ngonyango, ukuxolelwa kweempawu kunokwenzeka. Iingcali zikholelwa ukuba amalungu achaphazeleka ngakumbi, kokukhona kuya kubakho iimpawu zokuxolelwa.

Unyango lwe-juvenile idiopathic arthritis

Ukunyanga i-JIA yentombi yam kubandakanya amayeza enzelwe ukwenza buthathaka amajoni omzimba ukuze iyeke ukuhlasela umzimba wayo. Okwangoku, ukwimayeza ye-chemo ebizwa imethotrexate . Ndimtofa inaliti qho ebusuku bangoMgqibelo. Inika ukungaziphathi kakuhle kwaye iza noluhlu olude lweziphumo ebezingalindelekanga, ezibandakanya iintloko, ukudinwa okungapheliyo, kunye nezilonda ezinqabileyo eziphindaphindayo. Idosi yemihla ngemihla ifolic acid kuyanceda ukunciphisa ezo ziphumo bezingalindelekanga ezinye, kodwa hayi ngokupheleleyo. Okwangoku, iyamvumela ukuba aqhubeke nokubaleka kwaye adlale njengomntwana nangoku. Kwaye ngenxa yoko, sinombulelo.



Ezinxulumene: Ukunceda abantwana abancinci baziqhelanise neenaliti

Olunye ukhetho lonyango

Kuxhomekeka kuhlobo lwe-arthritis, i-flare-ups ye-JIA inokulawulwa ngamachiza angasebenziyo (anti-inflammatory) (i-NSAID) anje nge-ibuprofen okanye naproxen, kwaye umonakalo odibeneyo unokucothiswa okanye uthintelwe ngonyango lomzimba. Kwiimeko ezinzima, i-steroids inokumiselwa kunye nee-biologic agents ezifana ne-anakinra, canakinumab, okanye i-tocilizumab. I-JIA kunqabile ukuba ifune utyando; nangona ezinye iingxaki zibandakanya ukudumba kwamehlo kunye neengxaki zokukhula.

Ukufumana iqela lethu lenkxaso ye-idiopathic arthritis

Namhlanje intombi yam ineminyaka esixhenxe ubudala. Ungomnye waba phantse ngama-300,000 abantwana eUnited States abane-JIA. Lincinci, kodwa liqinile, uluntu-ndinombulelo kuba sikwazile ukuntywilisela kule minyaka idlulileyo.

Njengomama ongenaqabane okhathalela umntwana onesifo esinganyangekiyo ndedwa, bendisoloko ndiziva ndililolo. Kodwa ngoku Amaqela e-Facebook , iinkomfa zesizwe , Kwaye nkqu nonyaka inkampu yosapho yeJIA, ndikwazile ukufumana inkqubo yam yenkxaso.

Ukufuna le mithombo yenkxaso sisindululo sikaEmma Crowley, intloko yezobhengezo lwezigulana Iziko leYunivesithi yaseFlorida ePowell yoPhando lwezifo ezinqabileyo kunye nonyango , Yenza kubo bonke abazali babantwana abanezifo ezinganyangekiyo.

Rhoqo, abazali bayathandabuza ukwenza [oku], kodwa ayisiyiyo kuphela yokunceda uxinzelelo lweemvakalelo, ucacisa uCrowley. Amaqela enkxaso, emntwini okanye kwi-Intanethi, agcwele ezinye izigulana ebezikho apho ukhoyo. Ayaneli kugxininisa ngokwenyani kunye nawe, kodwa banokukufundisa. Benze ezabo iingcebiso kunye namacebo adlulisiweyo. Ngokukodwa phakathi kwezifo ezinqabileyo, uninzi lwala maqela enkxaso asondele kakhulu.

Ndidibene nabanye oomama abayaziyo into esijongene nayo nabaye bakwazi ukundinika iingcebiso xa ndilahlekile kulwandle lokukhetha endikwenzileyo. Kwaye ngenxa yokunxibelelana, ndikwazile nokuqesha umntu okwishumi elivisayo nge-JIA ukunceda ukugcina umntwana wam oyintombazana-umntu anokuqhakamshelana naye kwaye axhaswe nangona ndingakuqondi ngokupheleleyo oko ahamba nako.

Olu luntu lube lusapho lwethu. Kwaye ukuba nosapho kuye kwenza onke amanyathelo kolu hambo kube lula ukuwaphatha kunokuba ngekunjalo.

I-COVID yongeze eminye imiceli mngeni kolo hambo-ugqirha wentombi yam kutshanje undixelele ukuba ndicwangcise ukugcina ikhaya lakhe lingabikho esikolweni kunyaka olandelayo, nokuba ithatha sigqibo sini na isikolo. Kodwa nakuyo, siyazi ukuba asisodwa, sijikelezwe zezinye iintsapho kwisikhephe esifanayo, sonke sizama ukufumana amanyathelo ethu kunye njengoko sisebenza ukugcina abantwana bethu bekhuselekile.

Kwaye ndicinga ukuba sesona sifundo sikhulu kunazo zonke xa kufikwa kumba wokuba ngumzali womntwana onesifo esinganyangekiyo. Ufunda ukuziqhelanisa.

Ndiyabulela nje ukuba asikaze sifanelwe ukuziqhelanisa ndedwa.