Ukuba ne-JIA kungandisa ingozi yengane yakho yokudangala nokukhathazeka.Nansi indlela yokubasiza babhekane nakho.
Ukukhula kungase kube nzima ngokwanele, kodwa uma ungeza ezimeni ezifana ne-juvenile idiopathic arthritis (JIA), kungenza ubungane nobusha kube inselele nakakhulu.Ubuhlungu obuhlangene bungaphazamisa impilo yengane yakho yansuku zonke, kubangele hhayi kuphela ukulwa ngokomzimba kodwa nezinkinga ezingokomzwelo ezifana nokucindezeleka noma ukukhathazeka.Sikhulume nochwepheshe ngezindlela ezahlukene i-JIA ethinta ngayo impilo yengqondo yengane nokuthi ungasiza kanjani ingane yakho ukuba ibhekane ngokuphumelelayo nokukhula.
Ukuphazamiseka kwengqondo okunjengokucindezeleka nokukhathazeka kuvame kakhulu ezinganeni ezine-JIA, kusho uDiane Brown, MD, udokotela wamathambo ezingane eSibhedlela Sezingane sase-Los Angeles.“Ngaphambi kwe-COVID, isilinganiso esihle kakhulu sasiwukuthi amaphesenti ayi-10 kuye kwangama-25 ezingane ezinesifo samathambo angaba nezimpawu ezinzima zokudangala noma zokukhathazeka,” kusho yena.“Ngicabanga ukuthi mude manje.”Yingakho kubaluleke kakhulu ukwazi izimpawu zokucindezeleka nokukhathazeka nokuthi ungayisekela kanjani inhlalakahle yengane yakho ngokomzwelo.
UDkt. Will Fry, isazi sokusebenza kwengqondo yezingane eJohns Hopkins Children’s Hospital Chronic Pain Clinic eSt. Petersburg, eFlorida, wathi i-JIA ithinta impilo yengqondo ngezindlela eziningi."Okuyinhloko cishe ubuhlungu obuhlobene ne-JIA," esho.“Umthelela womzimba emalungwini nawo ungaholela ekutheni izingane zenze kancane futhi zikhungatheke ngenxa yokungakwazi ukwenza izinto.”abantu abanobuhlungu obungapheli."Ubuhlungu buyisibonakaliso esinamandla sokucindezeleka ezinganeni ezinesifo samathambo," kusho uDkt.
Ukungazethembi okuhlobene nokuphila nesifo esingamahlalakhona kungaba umthwalo osindayo ezinganeni nasebancane.“Ukungaqiniseki ngokuthi yiziphi izimpawu ezizoba nazo nokuthi impilo yazo izoba njani kungashiya izingane zicindezelekile noma zingenathemba,” kusho uFry.Inkambo ye-JIA ngokwayo ingaba yinto engalindelekile, okuholela kule mizwa.“Iziguli zinezinsuku ezinhle nezinsuku ezimbi futhi azinasiqiniseko sokuthi zizobukeka zizinhle yini uma zihlolwa okubalulekile noma uhambo oluya eDisneyland ngoba isifo samathambo singaqubuka - lokho kuyingxenye yokukhathazeka.izimbangela ezibalulekile,” kunezela uDkt. Brown.
Ukugula okungamahlalakhona kungenza noma ubani azizwe ehlukanisiwe, kusho uFry, kodwa kungaba inselele ikakhulukazi ezinganeni kanye nentsha esigabeni sempilo yazo lapho ngokwemvelo ifuna ukuzijabulisa futhi ivumelane nontanga yayo.Inkinga ye-JIA ingase yengeze inhlamba ekulimaleni.“Kungakhathaliseki ukuthi ukukhempa nomkhaya noma ukudlala ibhola nabangane, ukungakwazi ukuvivinya umzimba kungase kukhungathekise,” kusho uDkt.“Ukuphuza imithi usemusha ube nje ufuna ukufana nawo wonke umuntu kungaba omunye umshikashika.”.
Okuhlanganisa lo mzabalazo wezenhlalo iqiniso elibuhlungu lokuthi abantu abaningi abaqondi nje ukuthi kunjani ukuphila ne-JIA.“Kuba nzima kakhulu uma isimo sakho sivamise ukuthi singabonwa ngabanye abantu futhi singaqedi – lapho abangani bakho bengenabo abalingisi ozobasayinda futhi kungabi ngcono njengobuhlungu obulashiwe.Thola ukuzwela nokusekela.okunzima kontanga yakho nomndeni wakho ukukuqonda,” kusho uDkt.Isibonelo, uthisha angase angaqondi ukulinganiselwa komfundi ekilasini le-PE, noma angase abe nobunzima bokuqeda ukuhlolwa lapho umunwe ulimaza ngenxa yesifo samathambo.
Lapho zonke lezi zici zicatshangelwa, akumangazi ukuthi izingane ezine-JIA zingase zibe nezinkinga ezingokomzwelo ezinjengokucindezeleka noma ukukhathazeka.Kodwa wazi kanjani ukuthi ingane yakho ibhekene nobunzima obukhethekile futhi idinga ukwesekwa okwengeziwe?“Bheka ukucasuka, ukuzwela ukulahlwa, izingane ezingasazami ukuchitha isikhathi nabangane noma ukwenza izinto ebezikade zifuna ukuzenza,” kusho uFry.Imizwa yokuphelelwa ithemba, ukudabuka okuqhubekayo, futhi vele noma yimiphi imicabango noma inkulumo yezimpawu zokuzilimaza ingane yakho edinga ukusekelwa ngokushesha.
Ukucindezeleka nokukhathazeka kungase kubonakale njengezimpawu zomzimba ezinganakwa kalula ezinganeni nasebancane."Ukwanda kwezikhalazo zezimpawu ezingacacile nezixubile, ezifana nobuhlungu bekhanda, isicanucanu, ubuhlungu besifuba, ukugaya ukudla, njll., kungase kube uphawu uma ezinye izifo noma ukulimala kukhishwa," kusho uDkt.Ngaphezu kwalokho, noma yiziphi izinguquko ezinkulu emikhubeni yokulala noma yesifiso sokudla, ikakhulukazi ukuzuza kwesisindo noma ukuncipha, kungase futhi kubonise ukucindezeleka noma ukukhathazeka futhi kufanele kubonise isidingo sokusekelwa kwengane yakho, uthi.
Njengomzali noma umnakekeli, kungase kukuphathe kabi ukubona ingane yakho idonsa kanzima futhi ungazi ukuthi ungaqala ngaphi ukuze uyinikeze usizo oludingayo.“Enye yezindawo ezinhle kakhulu ongaqala ngayo isekhaya lakho nasebudlelwaneni bakho nezingane zakho,” kusho uFry.“Konke kuqala ngokukwazi ukukhuluma nezingane zakho, uqinisekise imizwa yazo futhi ube nazo ngempela kunoma yini ezibhekene nayo,” kusho yena.Izingxoxo ezivulekile nezithembekile (nakuba zihambisana neminyaka) mayelana nesimo sabo nokwelashwa nazo zingasiza ingane yakho ukuba izizwe isekelwe, ngokusho kwe-Arthritis Foundation.
Ukweseka impilo yengqondo yengane yakho kusho ukuyikhuthaza ukuthi ibambe iqhaza ekuzilibaziseni nasekuzijabuliseni.Ungase udinge ubuciko ukuze ubasize bathole izindlela zokushintsha imisebenzi ukuze baqhubeke nokubamba iqhaza naphezu kwezimpawu ze-JIA, uFry uthi.Lokhu kubaluleke kakhulu ngoba kusiza ukwakha “ukuzimela” ezinganeni, noma ukuzethemba kwazo ukuthi zingaphumelela entweni engasiza ekulweni nokucindezeleka, kusho i-Arthritis Foundation."Izingane zisesimweni esihle kakhulu lapho zenza okuthile," kusho uFry."Yenza umsebenzi wokuzilibazisa noma uthole indlela izingane ezizoziqhenya ngayo engasiza ukumisa i-snowball."
Igama elithi ukwelapha lisanokucwaswa, kodwa izingane eziningi ezine-JIA zingazuza ekusekelweni okwengeziwe okuvela kuchwepheshe wezempilo yengqondo njengodokotela wezengqondo.Ngesikhathi sokwelashwa, uFry uthi, ingane yakho ingabelana ngomzabalazo wayo ne-JIA, ithole ukwesekwa, futhi ifunde amasu awusizo okubhekana nayo impilo yonke.Khumbula, ukwelashwa akukhona nje ukwelapha izinkinga ezinkulu zempilo yengqondo—kusiza izingane eziningi, ngisho nanjengendlela yokuvimbela.“Iziguli zethu eziningi zingazuza ngokukhuluma ngokugula kwazo nomuntu oqeqeshelwe ukusiza izingane ezinezifo ezingamahlalakhona,” kusho uDkt.
Ukuxilongwa kwe-JIA kungaguqula izwe lengane yakho futhi kuyenze izizwe inesizungu, kodwa ziningi izindlela zokuhlinzeka ngosizo olungokwengqondo ukuze iqhubeke ikhula futhi iphumelele ekuphileni.Ngokuvamile inhlanganisela yamasu iyadingeka ukuze usekele kangcono ingane yakho, noma ngabe wukusiza ingane ukuthi ihlale ithintana nabangane noma izinto azithandayo, noma ukuxhumana nomelaphi.“Qaphela ukuthi ukufuna usizo ngezinkinga ezingokwengqondo kungaba amandla, hhayi ubuthakathaka,” uyasikhumbuza uDkt."Ukungenelela kusenesikhathi kungavimbela izinkinga ezinkulu."
Isikhathi sokuthumela: May-06-2023