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Kunjani ukukhulisa ingane ene-juvenile idiopathic arthritis (JIA)

Umphakathi

Tokokuqala indodakazi yami yalaliselwa i-MRI, kwakuwukuhlola ukuqinisekisa ukuthi akukho lutho olukhathazayo ekhanda lakhe. Yilawo kanye amagama asetshenziswa udokotela wakhe.

Ngangazi ukuthi uthini — babefuna izimila. Kodwa washo la mazwi kalula nje, ukumamatheka okuxakile ebusweni bakhe, ezama ukungigcina ngithulile yize sobabili sasazi ukuthi kukhona okungahambi kahle.

Ukufuna izimpendulo

Indodakazi yami ibikade ikhala ngentamo yayo isikhathi esingaphezu kwesonto. Ngobusuku obandulelayo, lezo zikhalazo bezivele zaqhuma kwaba ukumemeza nezinyembezi, okwangenza ngamsusa phansi ngamphuthumisa egumbini labezimo eziphuthumayo. Ngosuku olulandelayo, wayehudula umlenze wakhe wangakwesokudla ngemuva kwakhe. Intamo yakhe yayiqinile. I-Meningitis (ukukhathazeka kwami kokuqala) yayinqatshelwe, futhi manje yayikhona le-MRI — eyenzeka ngaso leso sikhathi.

Nalokho kubuye kwacaca. Ngesikhathi siphuma esibhedlela, indodakazi yami yayibonakala ilulame kakhulu. Elinye igciwane eliyinqaba, udokotela wakhe waqagela. Futhi sobabili besinethemba lokuthi ubeqinisile.

Kodwa-ke kwenzeka futhi.

Phakathi nezinyanga ezimbalwa ezalandela, indodakazi yami yaxoshwa futhi yaqhutshwa kaningi. Ubonwe ngochwepheshe futhi wahlolelwa yonke into kusuka ku-leukemia kuya ku-juvenile idiopathic arthritis (JIA).

Kwakungukugcina okwenza umqondo omkhulu. Ngalesi sikhathi, isihlakala sendodakazi yami naso sase sivaleke ngokuphelele. Futhi-ke, bekukhona izinto mayelana nesethulo sakhe i-rheumatologists yezingane athi azange zihlanganise. Ba-oda enye i-MRI futhi bangitshela uma lokho kungakhombisi izimpawu eziqondile zesifo samathambo, bazobe bemdlulisela kwi-neurology.

Izimpawu ze-juvenile idiopathic arthritis

Izimpawu ezijwayelekile ze-JIA zifaka:

Ubuhlungu obuhlangene, ikakhulukazi ekuseni noma ngemuva kokulala
Ukuvuvukala okuhlangene kuvame ukwethulwa emadolweni, okhalweni, endololwaneni noma emahlombe
Ubulukhuni obungavezwa njengokuxhuga noma ubuxhakaxhaka
Umkhuhlane omkhulu
Ama-lymph node avuvukile
Ukuqhuma kwesikhumba nxazonke zomzimba

Kufanele uhambise ingane yakho kumhlinzeki wezokunakekelwa kwezempilo ukuze ihlolwe ngokuphelele uma inezinye zalezi zimpawu ezihlala isikhathi esingaphezu kwesonto. Udokotela futhi anga-oda ukuhlolwa kwegazi noma i-X-ray ukukhipha ezinye izifo ezizimele ezinezimpawu ezifanayo.

Ukuthola ukuxilongwa kwe-juvenile idiopathic arthritis

Ngokujabulisayo, endodakazini yami, leyo MRI yanikeza ubufakazi besifo samathambo. Ngithi ngiyabonga kuphela ngoba ezinye izindlela empeleni zazimbi kakhulu-ezinye zinemiphumela engaba khona angithandi ngisho nokucabanga ngayo manje. Yize ngangingakaze ngizwe nge-JIA ngaphambi kobuhlungu bendodakazi yami, futhi ngangingakaze ngibone nokuthi izingane zingathola i-arthritis nhlobo, lokhu okungenani kwabonakala kungaphathwa. Ngemuva kwakho konke, abantu abaningi babhekana ne-arthritis, akunjalo?

Lokho kwakuyinkqubo yami yokucabanga okungenani. Kepha ngibe sengifunda kabanzi mayelana nokuthi iJIA izofaka ini; ukuthi kungasho ukuthini ngempilo yendodakazi yami yonke.

Yini i-juvenile idiopathic arthritis?

I-juvenile idiopathic arthritis uhlobo oluvame kakhulu lwe-arthritis ezinganeni nasebusheni, kusho ULeann Poston , MD, udokotela onelayisense owayekade enza umuthi wezingane futhi manje unikela kwi-Ikon Health. I-JIA phambilini yaziwa njenge-juvenile rheumatoid arthritis (JRA). Kuyisifo sokuzilimaza komzimba, okusho ukuthi kusezigabeni zokuphazamiseka lapho amaseli omzimba anenkinga yokutshela umehluko phakathi kwamaseli noma amaseli akha umuntu nongazimele noma abahlaseli.

Ngokwemigomo ye-layman: Amasosha omzimba ahlasela amalunga.

Ingabe i-juvenile idiopathic arthritis iyahamba?

Bangu izinhlobo eziyisikhombisa ze-JIA , ngalinye limele amazinga ahlukene obukhali:

I-JIA ehlelekile
I-Oligoarthritis
I-polyarticular arthritis, i-rheumatoid factor negative
I-polyarticular arthritis, into ye-rheumatoid enhle
I-psoriatic arthritis
I-arthritis ehlobene ne-Enthesitis
Isifo samathambo esingafani

Indodakazi yami kutholakale ukuthi inohlobo lwe-JIA olubizwa nge-polyarticular JIA, okusho ukuthi inamalungu angaphezu kwamahlanu athintekayo (empeleni simile ukubala wonke amalunga ayo athintekile ngalesi sikhathi, kunokubandakanyeka nje okuningi kakhulu ukulandela umkhondo). Uhlobo lwayo cishe lungakhuliswa kakhulu — cishe, luyoba nesifo samathambo impilo yalo yonke.

I-JIA yisifo esingelapheki, esingelashwa. Noma kunjalo, ngokwelashwa, ukuxolelwa ezimpawu kungenzeka. Ochwepheshe bakholelwa ukuthi lapho amalunga ethinteka kakhudlwana, mancane amathuba okuthi izimpawu ziye ekuxolelweni.

Ukwelashwa kwe-juvenile idiopathic arthritis

Ukwelapha i-JIA yendodakazi yami kubandakanya imishanguzo ehloselwe ukwenza buthakathaka amasosha omzimba ukuze iyeke ukuhlasela umzimba wayo. Okwamanje, usemuthi we-chemo obizwa ngokuthi imethotrexate . Ngimjova nami njalo ngoMgqibelo ebusuku. Kumenza angakwazi ukuzivikela futhi eza nohlu olude lwemiphumela engemihle, efaka ikhanda, ukukhathala okungamahlalakhona, nezilonda zomphimbo eziphindaphindayo. Umthamo wansuku zonke we i-folic acid kusiza ukudambisa leyo miphumela emibi eminye, kodwa hhayi ngokuphelele. Noma kunjalo, kuyamvumela ukuthi aqhubeke nokugijima futhi adlale njengengane namanje. Futhi ngalokho, sinokubonga.

OKUSHIWO: Ukusiza izingane ezincane ukuzijwayeza imijovo

Ezinye izinketho zokwelashwa

Ngokuya ngesimo sesifo samathambo, ama-flare-ups we-JIA angaphathwa ngemithi engeyona yokuvuvukala (i-NSAID) efana ne-ibuprofen noma i-naproxen, futhi ukulimala okuhlangene kungancishiswa noma kuvinjelwe ngokwelashwa komzimba. Ezimweni ezimbi kakhulu, i-steroids ingahle inqunywe kanye nama-biologic agents afana ne-anakinra, canakinumab, noma i-tocilizumab. I-JIA ayidingi ukuhlinzwa; yize ezinye izinkinga zifaka ukuvuvukala kwamehlo nezinkinga zokukhula.

Ukuthola iqembu lethu lezingane le-idiopathic arthritis support

Namuhla indodakazi yami ineminyaka engu-7 ubudala. Ungomunye we- cishe 300,000 izingane ezise-United States ezine-JIA. Ungumphakathi omncane, kodwa oqinile — engibongayo ukuthi sikwazile ukuzicwilisa eminyakeni embalwa edlule.

Njengomama ongayedwa onakekela ingane enesifo esingelapheki ngedwa, ngiye ngizizwe ngingedwa kakhulu. Kepha ngokusebenzisa Amaqembu e-Facebook , izingqungquthela zikazwelonke , futhi ngisho nekamu lomndeni laminyaka yonke le-JIA, ngikwazile ukuthola uhlelo lwami lokusekela.

Ukufuna le mithombo yokwesekwa kuyisiphakamiso u-Emma Crowley, oyinhloko yezokugqugquzela iziguli I-University of Florida's Powell Center for Rare Disease Research and Therapy , yenza kubo bonke abazali bezingane ezinezifo ezingalapheki.

Imvamisa, abazali bayanqikaza ukwenza [lokhu], kepha akukhona nje ukusiza ukucindezeleka ngokomzwelo, kuchaza uCrowley. Amaqembu okusekela, mathupha noma ku-inthanethi, agcwele ezinye iziguli ezake zaba lapho ukhona. Abagcini ngokugcizelela ngobuqotho nawe, kepha bangakufundisa. Bazenzele amathiphu abo namasu adluliswayo. Ikakhulukazi phakathi kwezifo ezingavamile, amaningi ala maqembu okusekela asondelene kakhulu.

Ngixhumane nabanye omama abaziyo ukuthi siyini esiphikisana nabo futhi abakwazile ukunginikeza izeluleko lapho ngilahlekile olwandle lokukhetha ebengifanele ukukwenza. Futhi ngenxa yalolo xhumo, ngikwazile ukuqasha umuntu osemusha nge-JIA ukusiza ingane yami-umuntu angakwazi ukuxhumana naye futhi asekelwe ngisho noma ngingakuqondi ngokugcwele lokho abhekene nakho.

Lo mphakathi usuphenduke umndeni wethu. Futhi ukuba naloyo mndeni kwenze zonke izindlela zalolu hambo zaba lula kakhulu ukusisingatha kunalokho obekuzoba khona.

I-COVID ingeze ezinye izinselelo kulolo hambo — udokotela wendodakazi yami usanda kungitshela ukuthi ngihlele ukugcina ikhaya lakhe lingaveli esikoleni ngonyaka ozayo, kungakhathalekile ukuthi uhlelo lwesikole lunquma ini. Kepha nakulokho, sazi ukuthi asisodwa, sizungezwe eminye imindeni esikebheni esifanayo, sonke sizama ukuthola izinyathelo zethu ezilandelayo ngokubambisana njengoba sisebenza ukugcina izingane zethu ziphephile.

Futhi ngicabanga ukuthi leso yisifundo esikhulu kunazo zonke uma kukhulunywa ngokukhulisa ingane enesimo sempilo esingapheli: Ufunda ukuzivumelanisa nezimo.

Ngibonga nje ukuthi akukaze kudingeke ukuthi sizivumelanise sodwa.