Kodi khungu la mwana wanu likukulirakulira komanso kuuma? Tiyeni tikambirane za Juvenile Systemic Scleroderma!

Kodi mwaona kuti khungu la mwana wanu lasintha mwadzidzidzi pang'ono? Mwina khungu lake lakhala lolimba pang'ono, lolimba, ndipo limamveka mosiyana ndi kukhudza? Ngati muwona china chake chonga chimenecho, muyenera kuda nkhawa pang'ono. Chifukwa, nthawi zina izi zitha kukhala chizindikiro cha matenda otchedwa Juvenile Systemic Scleroderma , omwe tikulankhula lero. Musadandaule, tidzakambirana za izi mwatsatanetsatane.

Kodi Scleroderma ya Ana Omwe Ali ndi Matenda a Khunyu ndi Chiyani?

Mwachidule, Juvenile Systemic Scleroderma (yomwe imadziwikanso kuti Systemic Sclerosis ) ndi vuto lomwe khungu la mwana wanu limakhala lolimba komanso lolimba kuposa masiku onse. Taganizirani izi ngati pepala la rabara lomwe limakula pang'onopang'ono ndikukhala ngati pulasitiki yolimba. Sikuti limangokhudza khungu lokha. Nthawi zina, lingakhudze ziwalo zina mkati mwa thupi la mwana. Mawu oti 'systemic' amatanthauza kuti lingakhudze thupi lonse la mwana.

Imeneyi ndi matenda odziteteza okha . Izi zikutanthauza kuti, chitetezo cha mthupi lathu, chitetezo cha mthupi, chimayamba molakwika kuukira maselo ake athanzi. Pankhani iyi ya Scleroderma, chitetezo cha mthupi chikaukira maselo a khungu mwanjira imeneyi, kutupa kapena kutupa kwa khungu kumachitika. Chifukwa cha kutupa kumeneku, puloteni yotchedwa collagen, yomwe imapatsa khungu lathu kulimba ndi kulimba, imayamba kupangidwa mopitirira muyeso. Monga momwe chilonda chimapangikira pakavulala, kupanga kolajeni mopitirira muyeso kumeneku kumayambitsa fibrosis kapena kuuma kwa khungu ngati zipsera.

Kodi pali mitundu ikuluikulu ya Systemic Scleroderma?

Inde, pali mitundu itatu ikuluikulu. Tiyeni tiwone zomwe zili.

1. Matenda a khungu ofalikira: Mu mtundu uwu, kukula kwa khungu la mwana kumatha kuoneka thupi lonse. Komanso, pakhoza kukhala mavuto ndi kugwira ntchito kwa ziwalo zamkati mwa thupi. Tangoganizirani, osati manja, miyendo, ndi nkhope zokha, komanso malo monga chifuwa ndi m'mimba akuyamba kukula.

2. Matenda a khungu ochepa (CREST syndrome): Matendawa ndi apadera pang'ono. Amatchedwanso CREST syndrome . CREST ndi chidule chomwe chimapangidwa pophatikiza zilembo zoyambirira za zizindikiro zisanu zazikulu za matendawa.

• C - Calcinosis: Izi zikutanthauza kuti calcium imayikidwa pansi pa khungu ndikupanga ziphuphu zazing'ono.
• R - Chochitika cha Raynaud: Izi zimachitika pamene zala za munthu (manja ndi mapazi) zimasanduka zoyera, zabuluu, kenako zofiira zikakhudzidwa ndi kuzizira kapena zikapanikizika. Zimakhala zovuta kulamulira kutentha kwa thupi.
• E - Kulephera kuyenda bwino kwa m'mero: Izi zikutanthauza kuti chubu chomwe chimanyamula chakudya kuchokera pakhosi kupita m'mimba (m'mero) sichikugwira ntchito bwino tikameza. Izi zingayambitse kutentha pamtima.Zinthu ngati zimenezo zingachitike.
• S - Sclerodactyly: Kukhuthala ndi kuuma kwa khungu pa zala. Zala zimatha kutupa ndikulimba, ngati soseji.
• T - Telangiectasia: Mitsempha yaing'ono yamagazi pakhungu imakula, kuoneka ngati ukonde wa akangaude kapena madontho ofiira.

3. Systemic sclerosis sine scleroderma: Apa ndi pamene ziwalo zamkati mwa thupi zimakhudzidwa popanda kukhuthala kapena kuuma kwa khungu. 'Sine scleroderma' amatanthauza 'popanda scleroderma (kuuma kwa khungu)'. Izi zikutanthauza kuti ngakhale kuti pangakhale palibe kusintha kwakukulu pakhungu, ziwalo zamkati zimatha kukhudzidwa.

Ndani amene ali ndi mwayi waukulu wopeza matenda a Juvenile Systemic Scleroderma? Kodi ndi ofala bwanji?

Matendawa otchedwa Juvenile Systemic Scleroderma amatha kukhudza aliyense wazaka zilizonse, mosasamala kanthu za jenda. Komabe, ndi zachilendo kwambiri kuti ana aang'ono, kutanthauza ana osakwana zaka 10, adwale matendawa. Mawu oti 'wachinyamata' amatanthauza kuti matendawa ndi omwe amakhudza ana. Mukayang'ana ziwerengero m'dziko ngati United States, akuti pali ana pakati pa 5,000 ndi 7,000 omwe ali ndi Scleroderma. Pafupifupi 2% ya anthu onse omwe ali ndi Scleroderma amakhudzidwa ndi matendawa asanakwanitse zaka 10. Ena 7% amakumana ndi matendawa pakati pa zaka 10 ndi 19. Chifukwa chake, matendawa amaonedwa kuti ndi matenda osowa kwambiri .

Kodi zizindikiro za matenda a Juvenile Systemic Scleroderma ndi ziti?

Pa vutoli, zizindikiro zimatha kukhudza khungu la mwana ndi ziwalo zamkati. Kuphatikiza apo, ana ambiri omwe ali ndi Systemic Scleroderma amakumananso ndi vuto lotchedwa Raynaud's phenomenon .

Zizindikiro zomwe zimakhudza khungu ndi minofu

Choyamba, tiyeni tiwone momwe izi zimakhudzira khungu ndi minofu yogwirizana nayo:

• Khungu limataya kulimba kwake. Limakhala lolimba, lolimba, komanso losaoneka bwino.
• Ntchito ya manja imachepa. Khungu limakhala lolimba, makamaka m'zala ndi m'manja, zomwe zimapangitsa kuti zikhale zovuta kupinda manja ndi kugwira zinthu.
• Mitsempha yofiira yamagazi imawonekera pakhungu, makamaka m'manja, kumaso, ndi kuzungulira misomali (telangiectasias). Izi zimatha kuwoneka ngati ukonde wa akangaude.
• Calcinosis ndi kupangika kwa tinthu tating'onoting'ono ta calcium pansi pa khungu kapena kwina kulikonse. Izi nthawi zina zimakhala zovuta.

Poyamba, khungu la m'manja ndi m'mapazi lingaoneke lotupa komanso lokulirakulira. Pakapita nthawi, khungu la mwana likhoza kukhala lolimba, lokhuthala, ndipo likhoza kukhala ndi makwinya, malo olowa, kapena mabowo ang'onoang'ono. Mwachitsanzo, zala za ana ena zimatha kutupa ngati soseji, kenako n’kukhala zolimba komanso zowala.

Zizindikiro zomwe zimakhudza ziwalo zamkati

Systemic Scleroderma ingakhudzenso ziwalo zamkati mwa mwana. Zizindikiro zake zingakhale monga:

• Kutupa, kuuma, ndi kupweteka kwa mafupa. Monga nyamakazi.
• Zilonda pa zala. Zilonda zimenezi zimatenga nthawi yayitali kuti zichiritsidwe.
• Mavuto a m'mimba. Mwachitsanzo, kutentha pamtima, kuvutika kumeza, kutsegula m'mimba, ndi kupweteka m'mimba.
• Mavuto opuma. Mungakhale ndi chifuwa chosatha kapena kupuma movutikira.
• Mavuto a impso. Izi zingayambitsenso kuthamanga kwa magazi (kuthamanga kwa magazi) .
• Kumva kutopa nthawi zonse. Kutopa msanga ngakhale mutachita chinthu chaching'ono.
• Kufooka kwa minofu.

Nthawi zambiri, vutoli silipweteka. Chifukwa chake, ana ena sangadziwe kuti ali ndi Scleroderma. Ichi ndichifukwa chake mwana amene wapezeka ndi matenda a Systemic Sclerosis ayenera kupita kwa dokotala nthawi zonse kuti akaone ngati ali ndi matenda a kuthamanga kwa magazi, mapapo, impso, m'mimba, komanso mtima.

Chochitika cha Raynaud

Ichi ndi chizindikiro chapadera. Chochitika cha Raynaud chimachitika pamene zala za mwana ndi zala zake zimasintha mtundu akamakhudzidwa ndi chimfine kapena akamavutika maganizo. Choyamba zimakhala zoyera , kenako buluu , ndipo pamapeto pake zimakhala zofiira . Ichi ndi chizindikiro chomwe chimawoneka kumayambiriro kwa matendawa. Nthawi zina ichi chingakhale chizindikiro choyamba chakuti matenda a Systemic Sclerosis alipo.

Zizindikiro zina zomwe zingachitike ndi vuto la Raynaud ndi izi:

• Kumva kutopa nthawi zonse
• Kupweteka kwa mafupa
• Kuvuta kumeza chakudya
• Kuwawa kwam'mimba
• Kutupa pachifuwa
• Kutsegula m'mimba
• Kuvuta kupuma

Nchifukwa chiyani achinyamata systemic scleroderma imachitika?

Kwenikweni, chomwe chimayambitsa matenda a Juvenile Systemic Scleroderma sichikudziwikabe . Komabe, kafukufuku wasonyeza kuti kuwonongeka kwa maselo omwe ali mkati mwa mitsempha yathu yamagazi kumapangitsa kuti maselo olumikizana ndi khungu, otchedwa fibroblasts, azigwira ntchito mopitirira muyeso. Ma fibroblast amenewa ndi maselo omwe amapanga mapuloteni monga collagen. Chifukwa chake, zizindikiro za Systemic Scleroderma zimayambitsidwa ndi kuchuluka kwa collagen.

N’chifukwa chiyani khungu la mwana limakhala lolimba kwambiri?

Mu Systemic Scleroderma, khungu limakhala lolimba chifukwa cha kuchuluka kwa mapuloteni otchedwa collagen m'thupi la mwana. Monga tafotokozera kale, ntchito ya chitetezo cha mthupi ndikuteteza thupi ku matenda ndi matenda. Komabe, mwa mwana yemwe ali ndi Scleroderma, chitetezo cha mthupi chimachita mopitirira muyeso ndikuyesera kuteteza thupi ndi maselo ake athanzi - ndiko kuti, chimaukira maselo ake . Zotsatira zake, maselo a mwana amayamba kupanga collagen yambiri. Kolajeni wochulukirapoyu amaikidwa pakhungu la mwana ndi ziwalo zamkati, zomwe zimapangitsa kuti azioneka wolimba komanso wokhuthala, wofanana ndi chilonda.

Kodi matenda a Systemic Scleroderma amachiritsidwa bwanji?

Dokotala wa mwana wanu adzazindikira matenda a Systemic Scleroderma poganizira zinthu zingapo.

• Zizindikiro ndi zizindikiro zakuthupi, monga kukhuthala kwa khungu ndi kusintha kwa zala.
• Kusintha kwapadera pakhungu, monga malo okhuthala, kukula kwawo, mawonekedwe awo, ndi mtundu wawo.
• Mbiri yonse yachipatala ndi kuyezetsa thupi kudzapereka chidziwitso chokhudza matenda omwe mwana adadwalapo kale komanso ngati pali wina aliyense m'banjamo amene adadwalapo matenda ofanana ndi amenewa.

Kodi ndi mayeso ati omwe amagwiritsidwa ntchito pozindikira matenda a Systemic Scleroderma?

Mayeso osiyanasiyana amachitidwa kuti athetse matenda ena ofanana ndi scleroderma, kuti adziwe momwe scleroderma imagwirira ntchito, komanso ngati ziwalo zina kupatula khungu zakhudzidwa. Mayeso a mapuloteni odziteteza ku matenda a autoimmune angapereke lingaliro la momwe matendawa akuyendera. Nthawi zambiri, madokotala amachita biopsy ya khungu .

Mayeso ena a Systemic Scleroderma ndi awa:

• Kuyezetsa magazi: Yesani kuchuluka kwa mapuloteni oteteza thupi komanso momwe impso zimagwirira ntchito.
• Mayeso a X-ray: Yang'anani kusintha kwa khungu la mwana, mafupa, ndi ziwalo zamkati (monga mapapo ndi matumbo).
• Mayeso oyesa momwe chakudya chikumedzera m'mimba: Izi zikutanthauza kuyang'ana momwe chubu chomwe chimanyamula chakudya kuchokera pakamwa kupita m'mimba chimagwirira ntchito.
• Kuyesa kwa ntchito ya m'mapapo: Kuyesa kupuma kuti muwone ngati mapapu a mwana akugwira ntchito bwino.
• Kujambula kwa mtima (Echocardiography): Onani momwe mtima wa mwana wanu ukugwirira ntchito.

Ndani amazindikira matenda a Juvenile Systemic Scleroderma?

Matenda a Systemic Scleroderma amapezedwa, kuyang'aniridwa, ndikuchiritsidwa ndi dokotala wa mwana wanu, katswiri wa nyamakazi yemwe ndi katswiri wa matenda amenewa, dokotala wa khungu , kapena gulu la madokotala omwe ndi akatswiri m'zigawo zinazake za thupi (m'mimba, mtima, mapapo, ndi impso).

Kodi matenda a Juvenile Systemic Scleroderma amachiritsidwa bwanji?

Cholinga chachikulu cha chithandizo cha scleroderma ndi kuletsa kutupa, kupewa kuti vutoli lisapitirire, komanso kupewa kuwonongeka kwa ziwalo zamkati.

Kuteteza khungu

Kuteteza khungu lanu kumathandiza kuti magazi aziyenda bwino pakhungu lanu ndi miyendo yanu. Izi ndizofunikira kwambiri kwa ana omwe ali ndi vuto la Raynaud . Nazi zina zomwe mungachite kuti muteteze khungu la mwana wanu:

• Pewani kuvulaza madera okhudzidwa, makamaka zala za m'manja ndi zala za m'mapazi.Ngakhale kung'ambika pang'ono kungakhale vuto lalikulu.
• Tetezani manja ndi mapazi a mwana wanu ku kuzizira. Sungani chipinda chofunda. M'nyengo yozizira (m'madera ozizira monga m'mapiri a dziko lathu), valani mwana wanu zovala zina zowonjezera, monga chipewa chokhala ndi makutu, magolovesi, ndi masokosi ofunda. Ubweya ndi wofunda kuposa thonje kapena nsalu zopangidwa. Komanso, ndi bwino kuvala zovala zingapo zopyapyala kuposa nsalu imodzi yokhuthala.
• Pewani kusuta fodya kapena kupangitsa mwana wanu kusuta.
• Pewani kupatsa mwana wanu mankhwala ozizira omwe ali ndi pseudoephedrine.
• Tetezani mwana wanu ku dzuwa lochuluka. Gwiritsani ntchito mafuta oteteza ku dzuwa monga momwe dokotala wanu akulangizira.
• Musagwiritse ntchito mankhwala oletsa kuuma, zotsukira thupi kapena nkhope, kapena sopo wouma pakhungu la mwana wanu zomwe zimaumitsa khungu.
• Gwiritsani ntchito mafuta odzola kuti khungu la mwana wanu likhale losalala monga momwe dokotala wanenera.

Kuchiza thupi

Mapulogalamu oyambira otambasula ndi owongolera masewera olimbitsa thupi, ochitidwa ndi akatswiri azachipatala ndi akatswiri azachipatala, angathandize mwana kukhala womasuka, kuyenda mosiyanasiyana m'malo olumikizirana mafupa, mphamvu ya minofu, komanso kuyenda kwa magazi kupita kumadera okhudzidwa. Mankhwalawa angathandizenso kupewa kukokana kwa mafupa, komwe kumalimbitsa mafupa. Ngati pakufunika kutero, dokotala angakulangizeni zomangira kapena zomangira.

Opaleshoni

Kawirikawiri, opaleshoni ya mafupa kapena opaleshoni yokongoletsa ingafunike kuti akonze zolakwika kapena zipsera zazikulu za mafupa kapena khungu. Komabe, opaleshoni isanachitike, vutoli liyenera kuchira , zomwe zikutanthauza kuti lakhala likugwira ntchito kwa zaka zingapo.

Dokotala wa mwana wanu angaganizire zomupatsa mwana wanu mafuta odzola ngati njira ina yothandizira. Mankhwala ena akufufuzidwa panopa.

Kodi mankhwala otani omwe amaperekedwa kwa Systemic Scleroderma?

Dokotala wanu angapereke mankhwala osiyanasiyana kuti achiritse vuto la mwana wanu. Mwachitsanzo:

• Corticosteroids: Amachepetsa kutupa m'minofu, m'mafupa, ndi pakhungu. Ma steroid angathandizenso kuchiza magawo oyambirira a kutupa m'ziwalo zamkati. Komabe, ma steroid nthawi zambiri sagwira ntchito bwino m'magawo omaliza a fibrotic a systemic sclerosis.
• Mankhwala oletsa kutupa omwe si a steroidal (NSAIDs): Mwachitsanzo , ibuprofen ndi naproxenMankhwala monga NSAID nthawi zina amagwiritsidwa ntchito kuchepetsa kutupa kwa mafupa mwa ana omwe ali ndi nyamakazi. Komabe, samalani kuti musagwiritse ntchito mopitirira muyeso NSAIDs ngati impso sizikugwira ntchito bwino.
• Mankhwala ena oletsa chitetezo chamthupi: Mankhwalawa amaperekedwa kuti achepetse chitetezo chamthupi komanso kupewa kutupa ndi zipsera zomwe zingachitike pambuyo pake.
• Mankhwala omwe amakulitsa mitsempha yamagazi ndikuwonjezera kuyenda kwa magazi: Awa amagwiritsidwa ntchito pochiza vuto la Raynaud .

Ngati mwana wanga ali ndi Systemic Scleroderma, kodi ndiyenera kuyembekezera chiyani?

Palibe mankhwala enieni a scleroderma. Komabe, mutha kuthandiza mwana wanu kuthana ndi vutoli ndikukhala nalo.

Matenda a Systemic Scleroderma ndi matenda osatha , a nthawi yayitali, komanso omwe amapitirira pang'onopang'ono. Amatha kukhala kwa miyezi kapena zaka. Kawonedwe ka mwana wanu kamadalira momwe zizindikirozo zilili komanso kuchuluka kwa thupi (makamaka khungu ndi ziwalo zamkati) zomwe zakhudzidwa.

Ana omwe ali ndi vuto la mapapo, mtima, kapena impso ali pachiwopsezo chachikulu cha mavuto, monga kuvulala kwa mafupa ndi kusintha kwa mawonekedwe a thupi. Vutoli lingakhudzenso kukula kwa mafupa a mwana.

Matenda a Systemic Scleroderma nthawi zambiri satha konse, koma amatha kukhalabe pamlingo womwewo kwa zaka zingapo osaipiraipira.

Kodi mungakhale ndi moyo wautali bwanji ndi Juvenile Systemic Scleroderma?

Moyo wa mwana amene wapezeka ndi matenda a Systemic Scleroderma umasiyana malinga ndi kuopsa kwa matendawa, makamaka ngati akhudza ziwalo zake zamkati. Ndikofunikira kulankhula ndi dokotala wanu za izi kuti mumvetse bwino.

Kodi matenda a Juvenile Systemic Scleroderma angapewedwe?

Popeza chifukwa chenicheni sichikudziwika, palibe njira yeniyeni yopewera Systemic Scleroderma.

Kodi ndingasamalire bwanji mwana wanga amene wapezeka ndi matenda a Systemic Scleroderma?

Ana omwe ali ndi Systemic Scleroderma ayenera kukhala moyo wabwinobwino momwe angathere. Ayenera kupita kusukulu, kusewera, komanso kutenga nawo mbali pazochitika zina. Kawirikawiri, palibe malire pa kuchuluka kwa zochita zolimbitsa thupi zomwe ana angachite (bola ngati zili zotetezeka). Kuchita masewera olimbitsa thupi kumathandiza kupewa kufooka ndikuwonjezera mphamvu ya minofu, kusinthasintha, komanso kupirira.

Kodi ndiyenera kupita ndi mwana wanga kwa dokotala liti?

Mwana wanu ayenera kutengedwa kuti akapimidwe nthawi zonse. Makamaka yang'anirani zizindikiro zomwe zimakhudza ziwalo zamkati. Ngati mwana wanu akumva kupweteka kwambiri , akuvutika kusuntha ziwalo za thupi lake, kapena ali ndi zizindikiro zomwe zimakhudza moyo wake watsiku ndi tsiku,Kaonaneni ndi dokotala nthawi yomweyo.

Ndi mafunso ati omwe ndiyenera kufunsa dokotala wanga?

Kufunsa mafunso ngati awa kungakuthandizeni:

• Kodi vuto la mwana wanga ndi lalikulu bwanji?
• Kodi ndingathandize bwanji kuteteza khungu la mwana wanga kunyumba?
• Kodi mwana wanga ayenera kupita kangati ku physiotherapy?
• Ndi zizindikiro ziti zomwe ndiyenera kuyang'anitsitsa ngati matendawa akukulirakulira?
• Kodi mwana wanga akufunika opaleshoni?

Kodi pali mitundu ina ya scleroderma?

Kuwonjezera pa mitundu ya Systemic Scleroderma, palinso mitundu iwiri ikuluikulu ya Scleroderma. Iyi ndi:

• Matenda a scleroderma: Mtundu uwu umakhudza khungu m'malo enaake a thupi. Ungafalikirenso ku minofu kapena mafupa omwe ali pansi, kapena ukhoza kusakhalapo. Sizimakhudza ziwalo zamkati kawirikawiri.
• Matenda a scleroderma (omwe amadziwikanso kuti systemic sclerosis): Izi ndi zomwe takhala tikulankhula m'nkhaniyi. Pa vutoli, khungu limatha kukhuthala kulikonse m'thupi. Kuwonjezera pa kusintha kwa khungu, minofu ya zipsera imatha kupangika m'ziwalo zamkati monga impso, mtima, mapapo, ndi m'mimba. Ana omwe ali ndi matenda a sclerosis amatha kukhala ndi kuyenda kochepa kwa mafupa chifukwa cha kusintha kwa khungu komwe kumachitika nthawi zambiri.

Zinthu zofunika kwambiri zomwe muyenera kukumbukira m'nkhaniyi

Matenda a Juvenile Systemic Scleroderma ndi matenda osowa kwambiri mwa ana omwe amachititsa kuti khungu likhale lolimba komanso lolimba, nthawi zina limakhudza ziwalo zamkati. Ndi matenda omwe amayambitsa chitetezo chamthupi.

• Zizindikiro: Khungu limauma, kutupa kwa zala, vuto la Raynaud (zala zimasintha mtundu nthawi yozizira), kupweteka kwa mafupa, mavuto am'mimba, komanso kupuma movutikira kungachitike.
• Chifukwa: Ngakhale sichidziwika bwino, akuganiziridwa kuti chimayambitsidwa ndi chitetezo chamthupi chosagwira ntchito bwino komanso kupanga kolajeni wambiri.
• Chithandizo: Kuwongolera matendawa, kuteteza khungu, kugwiritsa ntchito mankhwala olimbitsa thupi, komanso ngati kuli kofunikira, mankhwala. Ngakhale kuti palibe mankhwala okwanira, zizindikiro zake zimatha kuchiritsidwa.
• Chofunika kwambiri: Ngati mwana wanu ali ndi zizindikiro, funsani upangiri wa dokotala nthawi yomweyo. Ndikofunikira kwambiri kutumiza mwana wanu kuti akapimidwe nthawi zonse ndi kuwathandiza kukhala ndi moyo wabwinobwino. Musadandaule, mutha kuthana ndi vutoli mothandizidwa ndi madokotala.

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Scleroderma , matenda a pakhungu la ana, kulimbitsa khungu, collagen, matenda a autoimmune, vuto la Raynaud, CREST syndrome