Zomwe zili ngati kulera mwana ndi mwana idiopathic arthritis (JIA)
GuluTnthawi yoyamba mwana wanga wamkazi atakakhala ndi MRI, kunali kuti awonetsetse kuti asakhale ndi vuto lililonse m'mutu mwake. Awa anali mawu enieni omwe dokotala wake adamugwiritsa ntchito.
Ndinadziwa zomwe anali kunena — anali kufunafuna zotupa. Koma adalankhula mawuwo mopepuka momwe angathere, kumwetulira kowopsya pankhope pake, kuyesera kuti ndikhale bata ngakhale tonsefe timadziwa kuti china chake sichili bwino.
Kufufuza mayankho
Mwana wanga wamkazi anali akudandaula za khosi lake kwanthawi yopitilira sabata. Usiku wapitawo, madandaulowo adayamba kulira ndikulira, zomwe zidandipangitsa kuti ndimutsutse pansi ndikumuthamangitsa kuchipinda chadzidzidzi. Tsiku lotsatila, anali kukoka mwendo wake wamanja kumbuyo kwake. Khosi lake linali lolimba. Matenda a meningitis (nkhawa yanga yoyamba) anali atachotsedwa, ndipo tsopano panali MRI iyi — yomwe imachitika nthawi yomweyo.
Izinso zinabweranso bwino. Ndipo panthawi yomwe timachoka kuchipatala, mwana wanga wamkazi amawoneka kuti wachira. Matenda ena odabwitsa, dokotala wake anaganiza. Ndipo ife tonse timayembekeza kuti anali kulondola.
Koma zidachitikanso.
Kwa miyezi ingapo yotsatira, mwana wanga wamkazi adalumikizidwa ndikumangoyenda kangapo. Anamuwona ndi akatswiri ndikuwunika chilichonse kuyambira leukemia mpaka mwana idiopathic arthritis (JIA).
Ndi omaliza omwe amamvetsetsa kwambiri. Panthawiyi, dzanja lamwana wanga wamkazi linali litatsekedweratu. Ndipo komabe, panali zinthu zina pakufotokozera kwake madokotala a rheumatologists akuti sanaphatikizepo. Adalamula MRI ina ndikundiuza ngati izi sizikuwonetsa zizindikiritso za nyamakazi, akumuperekera ku neurology.
Zizindikiro za nyamakazi yachinyamata ya idiopathic
Zizindikiro zodziwika za JIA ndi izi:
- Ululu wophatikizana, makamaka m'mawa kapena pambuyo pogona
- Kutupa kophatikizana nthawi zambiri kumawonetsedwa m'maondo, m'chiuno, m'zigongono, kapena m'mapewa
- Kuuma komwe kumatha kuwonetsedwa ngati wopunduka kapena wopanikizika
- Kutentha kwakukulu
- Kutupa ma lymph node
- Kutupa pakhungu mozungulira thunthu
Muyenera kupita ndi mwana wanu kuchipatala kuti akamupime ngati ali ndi zizindikilozi zomwe zimatenga nthawi yayitali kuposa sabata. Dotolo amathanso kuyitanitsa kuyesa magazi kapena X-ray kuti athetse matenda ena omwe amadzitchinjiriza omwe ali ndi zizindikilo zofananira.
Kupeza matenda a nyamakazi achichepere
Mwamwayi, kwa mwana wanga wamkazi, MRI ija inapereka umboni wa nyamakazi. Ndikunena kuti ndikuthokoza kokha chifukwa njira zina zidali zoyipa-zina zomwe zingakhale ndi zotsatira zomwe sindimafuna kuziganizira tsopano. Ngakhale ndinali ndisanamvepo za JIA asanamwalire mwana wanga wamkazi, ndipo ndinali ndisanawonepo kuti ana atha kudwala nyamakazi, izi zimawoneka kuti ndizotheka. Kupatula apo, anthu ambiri amakhala ndi nyamakazi, sichoncho?
Awo anali malingaliro anga osachepera. Koma kenako ndidaphunzira zambiri za zomwe JIA ikuphatikizira; zomwe zingatanthauze moyo wonse wa mwana wanga wamkazi.
Kodi juvenile idiopathic arthritis ndi chiyani?
Matenda a nyamakazi a achinyamata ndi omwe amapezeka kwambiri kwa ana ndi achinyamata, akuti Leann Poston , MD, dokotala wololedwa yemwe kale anali kuchiritsa ana ndipo tsopano akuthandiza ku Ikon Health. JIA kale imadziwika kuti juvenile rheumatoid arthritis (JRA). Ndi matenda omwe amadzichitira okhaokha, omwe amatanthauza kuti ali mgulu lazovuta momwe chitetezo chamthupi chimavutikira kusiyanitsa pakati paokha kapena maselo omwe amapanga munthu komanso osadzikonda kapena owukira.
M'mawu a layman: Chitetezo cha mthupi chimagunda malo.
Kodi matenda a nyamakazi a achinyamata amapita?
Pali mitundu isanu ndi iwiri ya JIA , iliyonse ikuyimira milingo yosiyanasiyana:
- Zokhudza JIA
- Oligoarthritis
- Matenda a nyamakazi, chifuwa chachikulu cha mafupa
- Matenda a nyamakazi, nyamakazi yabwino
- Matenda a Psoriatic
- Matenda a nyamakazi
- Nyamakazi yosadziwika
Mwana wanga wamkazi wapezeka ndi mtundu wa JIA wotchedwa polyarticular JIA, zomwe zikutanthauza kuti ali ndi ziwalo zopitilira zisanu zomwe zakhudzidwa (tasiya kwenikweni kuwerengera ziwalo zake zonse zomwe zakhudzidwa pakadali pano, pali kutengapo gawo kochuluka kwambiri kuti tizitsatira). Mtundu wake ndiomwe sangakuliremo - mwina, adzakhala ndi nyamakazi kwa moyo wake wonse.
JIA ndi matenda osachiritsika, opanda mankhwala. Komabe, ndi chithandizo, kuchotsedwa ku zizindikiro ndizotheka. Akatswiri akukhulupirira kuti malo olumikizidwa kwambiri akamakhudzidwa, zizindikilozo zimayamba kukhululukidwa.
Chithandizo cha matenda a nyamakazi achichepere
Kuchiza JIA wa mwana wanga wamkazi kumaphatikizapo mankhwala omwe amatanthauza kuti achepetse chitetezo cha mthupi mwake kuti asiye kuukira thupi lake. Pakadali pano, ali pa mankhwala a chemo otchedwa methotrexate . Ndimamubaya jakisoni ndekha Loweruka lililonse usiku. Zimamupangitsa kuti asatengeke ndipo amabwera ndi mndandanda wazovuta, zomwe zimaphatikizapo kupweteka mutu, kutopa kwambiri, ndi zilonda zam'mimbazi zomwe zimayambanso. Mlingo wa tsiku ndi tsiku wa kupatsidwa folic acid amathandiza kuchepetsa zotsatirapo zake zina, koma osati kwathunthu. Komabe, zimamupatsa mwayi wopitiliza kuthamanga ndikusewera ngati mwana yemwe akadali. Ndipo chifukwa cha izi, ndife othokoza.
ZOKHUDZA: Kuthandiza ana ang'ono kuti azolowere jakisoni
Njira zina zamankhwala
Kutengera mtundu wa nyamakazi, kuphulika kwa JIA kumatha kuyendetsedwa ndi mankhwala osagwiritsa ntchito zotupa (NSAID) monga ibuprofen kapena naproxen, ndipo kuwonongeka kwamagulu kumatha kuchepetsedwa kapena kupewa ndi mankhwala. Zikakhala zovuta kwambiri, ma steroids atha kulembedwa limodzi ndi othandizira biologic monga anakinra, canakinumab, kapena tocilizumab. JIA samafunika kuchitidwa opaleshoni; ngakhale zovuta zina zimaphatikizira kutupa kwamaso ndi mavuto akukulira.
Kupeza gulu lathu lothandizira achinyamata la nyamakazi
Lero mwana wanga wamkazi ali ndi zaka 7. Ndi m'modzi wa pafupifupi 300,000 ana ku United States omwe ali ndi JIA. Ndi gulu laling'ono, koma lolimba-lomwe ndikuthokoza kuti takwanitsa kumiza zaka zingapo zapitazi.
Monga mayi wosakwatiwa wosamalira mwana wodwala matenda osachiritsika pandekha, nthawi zambiri ndakhala ndikumva kukhala ndekhandekha. Koma kudzera Magulu a Facebook , misonkhano yadziko , ndipo ngakhale msasa wapachaka wa banja la JIA, ndakhala ndikutha kupeza njira zondithandizira.
Kufufuza magwero othandizira ndi lingaliro la Emma Crowley, wamkulu wa oleza mtima kwa Powell Center ya University of Florida Yofufuza Matenda Osowa ndi Therapy , imapangitsa makolo onse kukhala ndi ana omwe ali ndi matenda osachiritsika.
Nthawi zambiri, makolo amakayikira [kuchita] izi, koma sizongothandiza kukhumudwa kwamaganizidwe, a Crowley akufotokoza. Magulu othandizira, pamasom'pamaso kapena pa intaneti, ali ndi odwala ena omwe akhala komwe muli. Osangogogomezera moona mtima ndi inu, koma atha kukuphunzitsani. Iwo apanga malingaliro awo ndi zidule zomwe zimaperekedwa. Makamaka pakati pa matenda osowa, ambiri mwa magulu othandizirawa ali pafupi kwambiri.
Ndalumikizana ndi amayi ena omwe amadziwa zomwe tikulimbana nazo komanso omwe adatha kundipatsa upangiri nditasowa munyanja zosankha zomwe ndimayenera kuchita. Ndipo chifukwa cha kulumikizana kumeneku, ndatha kulembetsa wachinyamata ndi JIA kuti ndithandizire kulera mwana wanga wamkazi - munthu yemwe angalumikizane naye ndikuthandizidwa ngakhale sindimamvetsetsa zomwe akukumana nazo.
Dera lino lakhala banja lathu. Kukhala ndi banjali kwathandiza kuti ulendowu usakhale wovuta kuthana nawo.
COVID yawonjezeranso zovuta zina paulendowu — dokotala wa mwana wanga wamkazi posachedwa anandiuza kuti ndikonzekere kusunga nyumba yake kusukulu chaka chamawa, mosasamala kanthu za zomwe sukulu izisankhe. Koma ngakhale mmenemo, tadziwa kuti sitili tokha, ozunguliridwa ndi mabanja ena omwe ali m'boti lofananalo, onse akuyesera kuti adziwe zomwe tingachite limodzi tikamayesetsa kuteteza ana athu.
Ndipo ndikuganiza kuti ndiye phunziro lalikulu kwambiri pankhani yakulera mwana yemwe ali ndi thanzi labwino: Mumaphunzira kusintha.
Ndikuthokoza kuti sitinasinthe tokha.