Ganda remwana wenyu riri kukura nekuoma here? Ngatitaurei nezveJuvenile Systemic Scleroderma!

Wakaona here kuti ganda remwana wako rachinja zvishoma? Pamwe ganda rava kugomara, kusimba, uye rinonzwa zvakasiyana kana ukaribata? Kana ukaona chimwe chinhu chakadai, unofanira kunetseka zvishoma. Nekuti, izvi zvinogona dzimwe nguva kuva chiratidzo chechirwere chinonzi Juvenile Systemic Scleroderma , chatiri kutaura nezvacho nhasi. Usazvidya moyo, tichataura nezvazvo zvakadzama.

Chii chinonzi Juvenile Systemic Scleroderma?

Zvichitaurwa zviri nyore, Juvenile Systemic Scleroderma (inozivikanwawo seSystemic Sclerosis ) chirwere chinoita kuti ganda remwana wako rive gobvu uye rakaomarara kupfuura zvakajairika. Funga nezvacho sejira rerabha rinokora zvishoma nezvishoma roita sepurasitiki yakaoma. Haringogumiri paganda chete. Dzimwe nguva, rinogona kukanganisa dzimwe nhengo dziri mumuviri wemwana futi. Izwi rekuti 'systemic' rinoreva kuti rinogona kukanganisa muviri wese wemwana.

Ichi chirwere che autoimmune . Kureva kuti, dziviriro yemuviri wedu, iyo immune system, inotanga kurwisa masero ayo ane hutano. Panyaya iyi yeScleroderma, kana immune system ikarwisa masero eganda nenzira iyi, kuzvimba kana kuzvimba kweganda kunoitika. Nekuda kwekuzvimba uku, puroteni inonzi collagen, iyo inoita kuti ganda redu rive nyore uye rive nesimba, inotanga kugadzirwa zvakanyanya. Kungofanana nevanga rinoumbwa kana kukuvara kukaitika, kugadzirwa kwe collagen yakawanda uku kunokonzera fibrosis kana kuoma kweganda.

Kune mhando huru dzeSystemic Scleroderma here?

Ehe, kune mhando nhatu huru. Ngationei kuti ndedzipi.

1. Diffuse cutaneous systemic sclerosis: Murudzi urwu, kukora kweganda remwana kunogona kuonekwa mumuviri wese. Uyewo, panogona kunge paine matambudziko nekushanda kwenhengo dzemukati memuviri. Fungidzira, kwete maoko, makumbo, nechiso chete, asiwo nzvimbo dzakadai sechipfuva nedumbu zvinotanga kukora.

2. Kurwara kweganda kwakaganhurirwa (CREST syndrome): Uku kwakasiyana zvishoma. Kunonziwo CREST syndrome . CREST ipfupiso inoumbwa nekubatanidza mabhii ekutanga ezviratidzo zvishanu zvikuru zvechirwere ichi.

• C - Calcinosis: Izvi zvinoreva kuti calcium inosara pasi peganda yoita mapundu madiki.
• R - Chiitiko chaRaynaud: Apa ndipo apo minwe (maoko netsoka) inoshanduka kuita chena, bhuruu, uye yozotsvuka kana yabatwa nechando kana paine kushushikana. Zvinova zvakaoma kudzora tembiricha yemuviri.
• E - Kusashanda zvakanaka kwemudumbu: Izvi zvinoreva kuti chubhu inotakura chikafu kubva pahuro kuenda mudumbu (gumbo) haisi kushanda zvakanaka patinomedza. Izvi zvinogona kukonzera chirungurira.Zvinhu zvakadaro zvinogona kuitika.
• S - Sclerodactyly: Kukora uye kuoma kweganda paminwe. Minwe inogona kuzvimba uye kuomarara, semasoseji.
• T - Telangiectasia: Mitsipa midiki yeropa iri paganda inokura, ichionekwa sedandemutande remadandemutande kana madotsi matsvuku.

3. Systemic sclerosis sine scleroderma: Apa ndipo apo nhengo dzemukati memuviri dzinokanganiswa pasina kukora kana kuoma kweganda. 'Sine scleroderma' zvinoreva 'pasina scleroderma (kuoma kweganda)'. Izvi zvinoreva kuti kunyangwe pasina shanduko dzakakura paganda, nhengo dzemukati dzinogona kukanganiswa.

Ndiani angangobatwa neJuvenile Systemic Scleroderma? Yakajairika zvakadii?

Chirwere ichi chinonzi Juvenile Systemic Scleroderma chinogona kubata chero munhu wezera ripi zvaro, zvisinei nekuti murume kana mukadzi. Zvisinei, hazviwanzoitiki kuti vana vadiki, kureva kuti, vana vari pasi pemakore gumi, vazvibate. Izwi rekuti 'vechidiki' pacharo rinoreva kuti ichi chirwere chinokanganisa vana. Kana ukatarisa nhamba dziri munyika yakaita seUnited States, zvinonzi kune vana vari pakati pe5,000 ne7,000 vane Scleroderma. Vanhu vanosvika 2% yevanhu vane Scleroderma vanobatwa nechirwere ichi vasati vasvitsa makore gumi. Vamwe 7% vanosangana nechirwere ichi vari pakati pemakore gumi negumi nemapfumbamwe. Saka, ichi chinoonekwa sechirwere chisingawanzoitiki .

Ndezvipi zviratidzo zveJuvenile Systemic Scleroderma?

Muchirwere ichi, zviratidzo zvinogona kukanganisa ganda remwana nenhengo dzemukati. Pamusoro pezvo, vana vazhinji vane Systemic Scleroderma vanosanganawo nechirwere chinonzi Raynaud's phenomenon .

Zviratidzo zvinokanganisa ganda nenyama

Kutanga, ngatitarisei kuti izvi zvinokanganisa sei ganda nenyama dzakabatana nadzo:

• Ganda rinorasikirwa nekusimba kwaro. Rinoomarara, rinoomarara, uye rinoita serisina kunaka.
• Kushanda kwemaoko kunoderera. Ganda rinova rakaoma, kunyanya muminwe nemuzvanza, zvichiita kuti zviome kukotamisa maoko nekubata zvinhu.
• Tsinga dzeropa dzvuku dzinoonekwa paganda, kunyanya pamaoko, kumeso, uye kutenderedza nzara (telangiectasias). Idzi dzinogona kutaridzika sedandemutande diki remadandemutande.
• Calcinosis kuumbwa kwemapundu madiki ecalcium pasi peganda kana kune imwe nzvimbo. Izvi dzimwe nguva zvinogona kuoma.

Pakutanga, ganda remaoko netsoka rinogona kuita serakazvimba uye rakakura. Nekufamba kwenguva, ganda remwana rinogona kuoma, kukora, uye rinogona kuita makwinya, nzvimbo dzakanyura, kana maburi madiki. Semuenzaniso, minwe yevamwe vana inogona kuzvimba semasoseji, yozooma uye kupenya.

Zviratidzo zvinokanganisa nhengo dzemukati

Systemic Scleroderma inogonawo kukanganisa nhengo dzemukati dzemwana. Zviratidzo zvinogona kusanganisira:

• Kuzvimba, kuomarara, uye kurwadziwa kwemajoini. Sezvakaita arthritis.
• Maronda paminwe. Maronda aya anotora nguva yakareba kuti apore.
• Matambudziko ekugaya chikafu. Semuenzaniso, chirungurira, kuoma kumedza, tsvina isina kusimba (manyoka), uye kurwadziwa mudumbu.
• Matambudziko ekufema. Unogona kukosora nguva dzose kana kufema zvakaoma.
• Matambudziko eitsvo. Izvi zvinogonawo kukonzera BP yakakwira (BP) .
• Kunzwa kuneta nguva dzese. Kukurumidza kuneta kunyangwe mushure mekuita chinhu chidiki.
• Kushaya simba kwetsandanyama.

Kazhinji, chirwere ichi hachirwadzi. Saka, vamwe vana vangasatomboziva kuti vane Scleroderma. Ndosaka mwana akaonekwa aine Systemic Sclerosis achifanira kuona chiremba nguva nenguva kuti vaongorore BP, mapapu, itsvo, matumbu, uye matambudziko emwoyo.

Chiitiko chaRaynaud

Ichi chiratidzo chakasiyana. Chiitiko chaRaynaud chinoitika kana minwe yemwana netsoka dzake zvichichinja ruvara kana achinge abatwa nechando kana kuti achinetseka. Kutanga zvinoshanduka kuva zvichena , zvozobva zvaita bhuruu , uye pakupedzisira zvitsvuku . Ichi chiratidzo chinogona kuonekwa pakutanga kwechirwere. Dzimwe nguva ichi chingava chiratidzo chekutanga chekuti Systemic Sclerosis iripo.

Zvimwe zviratidzo zvinogona kuitika neRaynaud's phenomenon zvinosanganisira:

• Kunzwa kuneta nguva dzese
• Kurwadziwa kwemajoini
• Kuoma kumedza chikafu
• Marwadzo emudumbu
• Kuzvimba kwechipfuva
• Manyoka
• Kuoma kufema

Sei Juvenile Systemic Scleroderma ichiitika?

Kutaura zvazviri, chikonzero chaicho cheJuvenile Systemic Scleroderma hachisati chazivikanwa . Zvisinei, tsvakurudzo yakaratidza kuti kukuvara kwemasero ari mukati metsinga dzedu dzeropa kunoita kuti masero emukati meganda, anonzi fibroblasts, ashande zvakanyanya. Aya mafibroblast ndiwo masero anogadzira mapuroteni akaita secollagen. Saka, zviratidzo zveSystemic Scleroderma zvinokonzerwa nekuwedzera kwecollagen.

Sei ganda remwana rakamanikana kudaro?

MuSystemic Scleroderma, ganda rinova rakaoma nekuda kweprotein yakawandisa inonzi collagen munyama dzemwana. Sezvatakambokurukura, basa remasoja ekudzivirira muviri nderekudzivirira muviri kubva kuhutachiona nezvirwere. Zvisinei, mumwana ane Scleroderma, masoja ekudzivirira muviri anonyanya kuita zvinhu uye anoedza kudzivirira muviri nemasero awo ane hutano - kureva kuti, anorwisa masero awo . Nekuda kweizvozvo, masero emwana anotanga kugadzira collagen yakawandisa. Iyi collagen yakawandisa inoiswa muganda remwana nenhengo dzemukati, zvichiita kuti chitarisiko chakaoma, chakakora, chakafanana nevanga.

Systemic Scleroderma inoonekwa sei?

Chiremba wemwana wenyu achaongorora Systemic Scleroderma nekutarisa zvinhu zvakati wandei.

• Zviratidzo nezviratidzo zvemuviri, zvakaita sekukora kweganda uye kuchinja kweminwe.
• Kuchinja kwakanangana neganda, kwakadai senzvimbo dzakakora, saizi yadzo, chimiro chadzo, uye ruvara rwadzo.
• Nhoroondo yakazara yezvekurapa uye kuongororwa kwemuviri zvichapa ruzivo nezvezvirwere zvemwana zvekare uye kana paine mumwe munhu mumhuri akambova nematambudziko akafanana.

Ndezvipi zviedzo zvinoshandiswa kuongorora Systemic Scleroderma?

Miedzo yakasiyana-siyana inoitwa kuti ionekwe kuti hapana zvimwe zvirwere zvakaita sescleroderma, kuti ione kuti scleroderma inoshanda zvakadii, uye kuti ione kana dzimwe nhengo dzemuviri dzisiri ganda dzakakanganiswa. Kuongororwa kwemapuroteni e autoimmune kunogona kupa pfungwa yemafambiro echirwere. Kashoma vanachiremba vanoita biopsy yeganda .

Mimwe miedzo yeSystemic Scleroderma ndeiyi:

• Kuongororwa kweropa: Kuyera huwandu hwemapuroteni anodzivirira muviri uye mashandiro eitsvo.
• Kuongororwa kweX-ray: Tsvaga shanduko dziri paganda remwana, mapfupa, uye nhengo dzemukati (dzakadai semapapu neura).
• Kuongororwa kwekutarisa maitiro ekumedza mugurokuro: Izvi zvinoreva kutarisa mashandiro echubhu inotakura chikafu kubva mumuromo kuenda mudumbu.
• Kuongororwa kwebasa remapapu: Kuongororwa kwekufema kuti uone kana mapapu emwana ari kushanda nemazvo.
• Kuongororwa kwemoyo (Echocardiography): Ona kushanda kuri kuita moyo wemwana wako.

Ndiani anoongorora chirwere cheJuvenile Systemic Scleroderma?

Systemic Scleroderma inoongororwa, inotariswa, uye inorapwa nachiremba wemwana wako, chiremba wemapfupa anonyanya kugadzirisa zvirwere izvi, chiremba weganda , kana timu yevanachiremba vane hunyanzvi muzvikamu zvakasiyana zvemuviri (mudumbu, moyo, mapapu, itsvo).

Juvenile Systemic Scleroderma inorapwa sei?

Chinangwa chikuru chekurapa scleroderma ndechekumisa kuzvimba, kudzivirira kuti chirwere chisawedzere kuipa, uye kudzivirira kukuvara kwenhengo dzemukati.

Kudzivirira ganda

Kudzivirira ganda rako kunobatsira kuti ropa rifambe zvakanaka paganda rako nemakumbo. Izvi zvakakosha zvikuru kuvana vane chirwere cheRaynaud . Heano zvimwe zvinhu zvaunogona kuita kuti udzivirire ganda remwana wako:

• Dzivisa kukuvadza nzvimbo dzakakanganiswa, kunyanya minwe nezvigunwe.Kunyangwe kubvaruka kudiki kunogona kuva dambudziko guru.
• Dzivirirai maoko netsoka dzemwana wenyu kubva kuchando. Chengetai imba ichidziya. Munguva yechando (munzvimbo dzinotonhora dzakadai semakomo enyika yedu), pfekedzai mwana wenyu mbatya dzekuwedzera, dzakadai sengowani ine magumbeze earflaps, magittens, uye masokisi anodziya. Mvere dzinodziya kupfuura donje kana machira ekugadzira. Zvakare, zviri nani kupfeka mbatya dzakatetepa pane imwe gobvu.
• Dzivisa kusvuta kana kuisa mwana wako panjodzi yekusvuta.
• Usape mwana wako mishonga inotonhora ine chinhu chinonzi pseudoephedrine.
• Dzivirira mwana wako kubva kuzuva rakawandisa. Shandisa mafuta ekudzivirira zuva sezvakakurudzirwa nachiremba wako.
• Musashandise sipo dzakaoma, zvekukwesha (zvinotsvedza, zvekukwesha muviri kana kumeso, sipo dzakaoma) paganda remwana wenyu.
• Shandisa mafuta ekuchenesa kuti ganda remwana wako rirambe rakatsetseka sezvakarairwa nachiremba.

Kurapa muviri

Zvirongwa zvekurovedza muviri zvinotungamirirwa nekutambanudza maoko, zvinoitwa nevanorapa muviri nevanoona nezvemabasa, zvinogona kubatsira kuchengetedza mwana achigona kufamba-famba, simba remhasuru, uye ropa richiyerera kunzvimbo dzakakanganiswa. Kurapa uku kunogonawo kubatsira kudzivirira kusimba kwemajoini, izvo zvinoita kuti majoini aome. Kana zvichidikanwa, chiremba anogona kukurudzira masimbi kana masimbi ekusimbisa.

Kuvhiya

Kashoma, kuvhiyiwa kwemaoko emapfupa kana kuvhiyiwa kwekunaka kungadiwa kugadzirisa maronda kana mavanga akakomba emajoini kana ganda. Zvisinei, chirwere ichi chisati chaitwa, chinofanira kunge chiri muchimiro chakanaka , zvichireva kuti chave chisisina kushanda kwemakore akati wandei.

Chiremba wemwana wenyu anogona kufunga nezvekuisirwa musero wemapfupa emwana wenyu wega wega senzira yekurapa. Mamwe marapirwo ari kuongororwa parizvino.

Ndeipi mishonga inopihwa yeSystemic Scleroderma?

Chiremba wenyu anogona kunyora mishonga yakasiyana-siyana yekurapa chirwere chemwana wenyu. Semuenzaniso:

• Corticosteroids: Deredza kuzvimba kwetsandanyama, majoini, uye ganda. MaSteroid anogonawo kubatsira kurapa matanho ekutanga ekuzvimba munhengo dzemukati. Zvisinei, masteroid haawanzo shanda zvakanyanya mumatanho ekupedzisira efibrotic esystemic sclerosis.
• Mishonga isingashandisi steroidal inorwisa kuzvimba (NSAIDs): Semuenzaniso , ibuprofen ne naproxenMishonga yakaita seNSAIDs dzimwe nguva inoshandiswa kuderedza kuzvimba kwemajoini kuvana vane arthritis. Zvisinei, kungwarira kunofanira kuitwa kuti musashandise NSAIDs zvakanyanya kana kushanda kweitsvo kusina kunaka.
• Mimwe mishonga inogadzirisa masoja emuviri: Iyi inopihwa kuderedza maitiro emuviri ekudzivirira chirwere uye kudzivirira kuzvimba uye mavanga anotevera.
• Mishonga inotambanudza mitsipa yeropa uye inovandudza kuyerera kweropa: Iyi inoshandiswa kurapa chirwere chaRaynaud .

Kana mwana wangu aine Systemic Scleroderma, chii chandinofanira kutarisira?

Hapana mushonga chaiwo wekurapa scleroderma. Zvisinei, unogona kubatsira mwana wako kuti ararame nechirwere ichi.

Systemic Scleroderma chirwere chisingaperi , chinogara kwenguva refu, uye chinoramba chichikura zvishoma nezvishoma. Chinogona kugara kwemwedzi kana makore. Maonero emwana wako anoenderana nekuti zviratidzo zvacho zvakapararira sei uye kuti muviri wake (kunyanya ganda nenhengo dzemukati) zvinokanganiswa sei.

Vana vane matambudziko emapapu, emwoyo, kana eitsvo vari panjodzi huru yekusangana nematambudziko akadai sekuoma kwemajoini uye kuchinja kwechimiro chemuviri. Dambudziko iri rinogonawo kukanganisa kukura kwemapfupa emwana.

Systemic Scleroderma kazhinji haiperi zvachose, asi inogona kuramba iri padanho rimwe chete kwemakore akati wandei isinganyanyi kuipa.

Unogona kurarama kwenguva yakareba sei neJuvenile Systemic Scleroderma?

Nguva yekurarama kwemwana akaonekwa aine Systemic Scleroderma inosiyana zvichienderana nekuoma kwechirwere ichi, kunyanya kana chakakanganisa nhengo dzemukati make. Zvakakosha kutaura nachiremba wako nezvenyaya iyi kuti unzwisise zviri pachena.

Ko Juvenile Systemic Scleroderma inogona kudzivirirwa here?

Sezvo chikonzero chaicho chisingazivikanwi, hapana nzira chaiyo yekudzivirira Systemic Scleroderma.

Ndingatarisira sei mwana wangu akaonekwa kuti ane Systemic Scleroderma?

Vana vane Systemic Scleroderma vanofanira kurarama hupenyu hwakajairika sezvinobvira. Vanofanira kuenda kuchikoro, kutamba, uye kutora chikamu muzviitiko. Kazhinji, hapana miganhu pahuwandu hwemabasa emuviri anogona kuitwa nevana (chero bedzi zvakachengeteka). Kurovedza muviri kunobatsira kudzivirira kushaya simba uye kunowedzera simba retsandanyama, kuchinjika, uye kutsungirira.

Ndinofanira kuenda nemwana wangu kuna chiremba riini?

Mwana wako anofanira kuendeswa kunoongororwa nguva nenguva. Kunyanya tarisa zviratidzo zvinokanganisa nhengo dzemukati. Kana mwana wako achirwadziwa zvakanyanya , achinetseka nekufambisa nhengo dzemuviri wake, kana kuti aine zviratidzo zvinokanganisa hupenyu hwake hwezuva nezuva,Enda kuna chiremba nekukasika.

Mibvunzo ipi yandinofanira kubvunza chiremba wangu?

Kubvunza mibvunzo yakaita seiyi kuchakubatsira:

• Dambudziko remwana wangu rakakomba zvakadii?
• Ndingabatsira sei kuchengetedza ganda remwana wangu kumba?
• Mwana wangu anofanira kuenda kuchipatara kangani?
• Ndezvipi zviratidzo zvandinofanira kutarisa kana chirwere chikawedzera?
• Mwana wangu anofanira kuvhiyiwa here?

Kune mamwe marudzi escleroderma here?

Pamusoro pemhando dzeSystemic Scleroderma, kune mhando mbiri huru dzeScleroderma. Idzi ndeidzi:

• Localized scleroderma: Rudzi urwu runokanganisa ganda chete munzvimbo dzakati wandei dzemuviri. Runogonawo kupararira kusvika mutsandanyama kana mapfupa ari pasi, kana kuti runogona kunge rusipo. Haruwanzokanganisa nhengo dzemukati.
• Systemic scleroderma (inozivikanwawo se systemic sclerosis): Izvi ndizvo zvatanga tichitaura nezvazvo muchinyorwa chino. Mumamiriro ezvinhu aya, ganda rinogona kukura chero kupi zvako mumuviri. Pamusoro pekuchinja kweganda, mavanga anogona kukura munhengo dzemukati dzakadai seitsvo, moyo, mapapu, uye mudumbu. Vana vane systemic sclerosis vanogona kunge vasina kufamba zvakanaka kwemajoini nekuda kwekuchinja kweganda kwakapararira.

Zvinhu zvinonyanya kukosha zvaunofanira kurangarira munyaya ino

Juvenile Systemic Scleroderma chirwere chisingawanzoitiki muvana chinoita kuti ganda rikure uye riome, dzimwe nguva zvichikanganisa nhengo dzemukati. Ichi chirwere chinokonzerwa ne autoimmune.

• Zviratidzo: Kuoma kweganda, kuzvimba kweminwe, chiitiko chaRaynaud (minwe inochinja ruvara kana kuchitonhora), kurwadziwa kwemajoini, matambudziko ekugaya chikafu, uye kunetseka kufema zvinogona kuitika.
• Chikonzero: Kunyangwe zvisingazivikanwe chaizvo, zvinofungidzirwa kuti zvinokonzerwa nekushanda zvisina kunaka kwemasoja emuviri uye kugadzirwa kwakanyanya kwecollagen .
• Kurapa: Dzora chirwere, chengetedza ganda, shandisa physiotherapy uye, kana zvichidikanwa, shandisa mishonga. Kunyange zvazvo pasina mushonga wakakwana, zviratidzo zvinogona kugadziriswa.
• Chinonyanya kukosha: Kana mwana wako aine zviratidzo, tsvaga rubatsiro rwechiremba nekukasika. Zvakakosha kuti umutumire mwana wako kuti anoongororwa nachiremba nguva dzose uye umubatsire kurarama hupenyu hwakajairika. Usazvidya mwoyo, unogona kugadzirisa mamiriro ezvinhu aya nerubatsiro rwevanachiremba.

Scleroderma , zvirwere zveganda zvevana, kusimbisa ganda, collagen, zvirwere zve autoimmune, chiitiko chaRaynaud, CREST syndrome