Olususu lw’omwana wo lugonza ne lukaluba? Ka twogere ku Juvenile Systemic Scleroderma!

Okirabye nti olususu lw’omwana wo omuto lukyuse katono mu bwangu? Mpozzi olususu lufuuse olukalu katono, lunywezeddwa, era nga luwulira nga lwa njawulo bw’okwatako? Bw’olaba ekintu ng’ekyo, wandibadde weeraliikirira katono. Kubanga, kino oluusi kiyinza okuba akabonero k’embeera eyitibwa Juvenile Systemic Scleroderma , gye twogerako leero. Teweeraliikiriranga, kino tugenda kukyogerako mu bujjuvu.

Obulwadde bwa Juvenile Systemic Scleroderma kye ki?

Mu ngeri ennyangu, Juvenile Systemic Scleroderma (era emanyiddwa nga Systemic Sclerosis ) mbeera olususu lw’omwana wo mwe lufuuka olugonvu era nga lukaluba okusinga ku lwa bulijjo. Kilowoozeeko ng’ekipande kya kapiira ekigenda kigonvuwa mpolampola ne kifuuka ng’akaveera amakalu. Tekikoma ku lususu lwokka. Oluusi, kiyinza okukosa ebitundu ebirala ebiri munda mu mubiri gw’omwana nabyo. Ekigambo ‘systemic’ kitegeeza nti kiyinza okukosa omubiri gw’omwana gwonna.

Kino mu butuufu bulwadde bwa autoimmune . Kwe kugamba, enkola y’omubiri gwaffe ey’okwekuuma, abaserikale b’omubiri, mu nsobi etandika okulumba obutoffaali bwayo obulamu. Mu mbeera eno eya Scleroderma, abaserikale b’omubiri bwe balumba obutoffaali bw’olususu mu ngeri eno, okuzimba oba okuzimba olususu kubaawo. Olw’okuzimba kuno, puloteyina eyitibwa kolagini ewa olususu lwaffe obugumu n’amaanyi, etandika okukolebwa ekisusse. Nga enkovu bwe yabaawo ng’omuntu afunye obuvune, okukola kolagini kuno okuyitiridde kuleeta fibrosis oba okukaluba kw’olususu okulinga enkovu.

Waliwo ebika ebikulu ebya Systemic Scleroderma?

Yee, waliwo ebika ebikulu bisatu. Ka tulabe kye bali.

1. Diffuse cutaneous systemic sclerosis: Mu kika kino, olususu lw’omwana olugonza lusobola okulabibwa mu mubiri gwonna. Ate era, wayinza okubaawo obuzibu mu nkola y’ebitundu by’omubiri eby’omunda. Teebereza, si mikono, magulu, ne ffeesi byokka, naye n’ebifo ng’ekifuba n’olubuto bitandika okugonza.

2. Obulwadde bwa Limited cutaneous systemic sclerosis (CREST syndrome): Ono wa njawulo katono. Era kiyitibwa obulwadde bwa CREST syndrome . CREST nfunyiro ekolebwa nga tugatta ennukuta ezisooka mu bintu ebitaano ebikulu ebiri mu mbeera eno.

• C - Calcinosis: Kino kitegeeza nti calcium atereka wansi w’olususu n’akola obutundutundu obutonotono.
• R - Ekintu kya Raynaud: Kino kibaawo ensonga z’engalo (emikono n’ebigere) bwe zifuuka enjeru, bbululu, n’oluvannyuma emmyufu nga ziri mu mbeera ennyogovu oba nga ziri ku situleesi. Kifuuka kizibu okutereeza ebbugumu ly’omubiri.
• E - Esophageal motility dysfunction: Kino kitegeeza nti tube etambuza emmere okuva mu mumiro okutuuka mu lubuto (esophagus) tekola bulungi nga tumira. Kino kiyinza okuvaako omutima okulumwa.Ebintu ng’ebyo bisobola okubaawo.
• S - Sclerodactyly: Okugonza n’okukaluba kw’olususu ku ngalo. Engalo ziyinza okuzimba ne zikaluba, nga sosegi.
• T - Telangiectasia: Emisuwa emitono mu lususu gigaziwa, ne girabika ng’emikutu gy’enjuki oba ennukuta emmyufu.

3. Systemic sclerosis sine scleroderma: Kino kye kiseera ebitundu by’omubiri eby’omunda bwe bikosebwa awatali kugonza oba kukaluba kwonna ku lususu. ‘Sine scleroderma’ kitegeeza ‘nga tewali scleroderma (okukaluba kw’olususu)’. Kino kitegeeza nti wadde nga tewayinza kubaawo nkyukakyuka nnene ku lususu, ebitundu by’omubiri eby’omunda biyinza okukosebwa.

Ani asinga okulwala obulwadde bwa Juvenile Systemic Scleroderma? Kitera kitya?

Embeera eno eyitibwa Juvenile Systemic Scleroderma mu butuufu esobola okukwata omuntu yenna ow’emyaka gyonna, awatali kufaayo ku kikula ki. Wabula tekitera kubaawo nnyo abaana abato, kwe kugamba, abaana abali wansi w’emyaka 10, okubufuna. Ekigambo ‘omuto’ kyennyini kitegeeza nti eno mbeera ekwata abaana. Bw’otunuulira ebibalo ebiri mu nsi nga Amerika, kigambibwa nti waliwo abaana abali wakati w’emitwalo etaano n’emitwalo musanvu abalina obulwadde bwa Scleroderma. Nga 2% ku bantu bonna abalina Scleroderma bakosebwa obulwadde buno nga tebannaweza myaka 10. Abalala 7% boolekagana n’embeera eno wakati w’emyaka 10 ne 19. So, this is considered a very rare disease .

Bubonero ki obulaga obulwadde bwa Juvenile Systemic Scleroderma?

Mu mbeera eno, obubonero buyinza okukosa olususu lw’omwana n’ebitundu by’omunda. Okugatta ku ekyo, abaana bangi abalina obulwadde bwa Systemic Scleroderma nabo bafuna embeera eyitibwa Raynaud’s phenomenon .

Obubonero obukosa olususu n’ebitundu by’omubiri

Okusooka, ka tulabe engeri kino gye kikosaamu olususu n’ebitundu ebikwatagana nabyo:

• Olususu lufiirwa obugumu bwalwo. Kifuuka kikalu, kinywezeddwa era nga tekirabika bulungi.
• Omulimu gw’emikono gukendeera. Olususu lunywezebwa naddala mu ngalo n’engalo ekizibu okufukamira emikono n’okukwata ebintu.
• Emisuwa emimyufu girabika ku lususu naddala ku ngalo, mu maaso, n’okwetooloola emisumaali (telangiectasias). Bino bisobola okufaanana ng’obusimu obutono obw’enjuki.
• Calcinosis kwe kutondebwa kw’obutundutundu obutonotono obwa calcium wansi w’olususu oba awalala. Bino oluusi biyinza okuwulira nga bikalubye.

Mu kusooka, olususu ku ngalo n’ebigere luyinza okulabika ng’oluzimba n’okugaziwa. Ekiseera bwe kigenda kiyitawo, olususu lw’omwana luyinza okunywezebwa, ne lugonvuwa, era luyinza okufuna enviiri, ebifo ebibbira oba obunnya obutonotono. Okugeza engalo z’abaana abamu ziyinza okuzimba nga sosegi, olwo ne zikaluba ne zimasamasa.

Obubonero obukosa ebitundu by’omubiri eby’omunda

Systemic Scleroderma era esobola okukosa ebitundu by’omubiri eby’omunda eby’omwana. Obubonero buyinza okuli:

• Okuzimba kw’ennyondo, okukaluba n’okulumwa. Nga obulwadde bw’endwadde z’enkizi.
• Amabwa ku nsonga z’engalo. Amabwa gano gatwala ekiseera kiwanvu okuwona.
• Obuzibu mu nkola y’okugaaya emmere. Okugeza, okulumwa omutima, okukaluubirirwa okumira, omusulo ogutabuse (ekiddukano), n’okuzimba olubuto.
• Obuzibu mu kussa. Oyinza okusesema obutasalako oba okukaluubirirwa okussa.
• Obuzibu mu kibumba. Kino era kiyinza okuvaako puleesa (hypertension) .
• Okuwulira ng’okooye buli kiseera. Okukoowa amangu ne bw’oba ​​okoze ekintu ekitono.
• Obunafu bw’ebinywa.

Ebiseera ebisinga, embeera eno teruma. N’olwekyo abaana abamu bayinza n’obutamanya nti balina Scleroderma. Eno y’ensonga lwaki omwana azuuliddwa ng’alina obulwadde bwa Systemic Sclerosis alina okugenda ew’omusawo buli kiseera okukebera oba alina obuzibu mu puleesa, amawuggwe, ekibumba, mu lubuto n’omutima.

Ekintu ekirabika obulungi ekya Raynaud

Kano kabonero ka njawulo nnyo. Ekintu kya Raynaud, engalo n’obugere bw’omwana bwe bikyuka langi ng’ali mu mbeera ennyogovu oba ng’ali ku situleesi. Okusooka ne zifuuka enjeru , oluvannyuma za bbululu , ate okukkakkana nga zimyufu . Kano kabonero akayinza okulabibwa mu ntandikwa y’obulwadde buno. Oluusi kino kiyinza okuba ekisookera ddala ekiraga nti obulwadde bwa Systemic Sclerosis buliwo.

Obubonero obulala obuyinza okulabika n’obulwadde bwa Raynaud mulimu:

• Okuwulira ng’okooye buli kiseera
• Obulumi mu binywa
• Okukaluubirirwa okumira emmere
• Okulumwa olubuto
• Okuzimba mu kifuba
• Embiro
• Okukaluubirirwa okussa

Lwaki Juvenile Systemic Scleroderma ebaawo?

Mu butuufu, ekituufu ekivaako Juvenile Systemic Scleroderma tekinnamanyika . Kyokka okunoonyereza kulaga nti okwonooneka kw’obutoffaali obusimbibwa munda mu misuwa gyaffe kireetera obutoffaali obuyunga mu lususu obuyitibwa fibroblasts okukola ennyo. Fibroblasts zino ze butoffaali obukola obutoffaali nga kolagini. Kale, obubonero bwa Systemic Scleroderma buva ku kukola kuno okusukkiridde kwa kolagini.

Lwaki olususu lw’omwana lunywezeddwa nnyo?

Mu Systemic Scleroderma, olususu lunywezebwa olw’ekirungo ekiyitibwa collagen ekisukkiridde mu bitundu by’omwana. Nga bwe twayogeddeko emabegako, omulimu gw’abaserikale b’omubiri kwe kukuuma omubiri obutakwatibwa yinfekisoni n’endwadde. Wabula mu mwana alina Scleroderma, abaserikale b’omubiri basukkiridde okukola era ne bagezaako okukuuma omubiri n’obutoffaali bwagwo obulamu – kwe kugamba, balumba obutoffaali bwagwo . N’ekyavaamu, obutoffaali bw’omwana butandika okukola kolagini omungi. Kolajeni ono ayitiridde aterekebwa mu lususu lw’omwana n’ebitundu by’omunda, n’akola endabika enkalu era enzito, okufaananako n’enkovu.

Enkola ya Systemic Scleroderma ezuulibwa etya?

Omusawo w’omwana wo ajja kuzuula obulwadde bwa Systemic Scleroderma ng’alowooza ku nsonga eziwerako.

• Obubonero n’obubonero bw’omubiri, gamba ng’olususu okugonza n’enkyukakyuka mu ngalo.
• Enkyukakyuka ezenjawulo mu lususu, gamba ng’ebitundu ebigonvu, obunene bwabyo, enkula yaabyo ne langi yaabyo.
• Ebyafaayo by’obujjanjabi ebijjuvu n’okukeberebwa omubiri bijja kuwa amawulire agakwata ku ndwadde z’omwana ze yalina emabega n’okumanya oba waliwo omuntu yenna mu maka abadde n’embeera ezifaananako bwe zityo.

Bikebere ki ebikozesebwa okuzuula obulwadde bwa Systemic Scleroderma?

Okukebera okw’enjawulo kukolebwa okuggyawo embeera endala ezifaananako n’obulwadde bwa scleroderma, okuzuula engeri scleroderma gy’ekola, n’okuzuula oba ebitundu ebirala ng’oggyeeko olususu bikosebwa. Okukebera obutoffaali obuziyiza endwadde kuyinza okuwa endowooza ku ngeri obulwadde buno gye butambulamu. Tekitera nnyo, abasawo bakola okukebera olususu .

Wano waliwo ebigezo ebirala eby’okukeberebwa ku Systemic Scleroderma:

• Okukebera omusaayi: Pima obutoffaali obuziyiza endwadde n’enkola y’ekibumba.
• Okukebera mu X-ray: Noonya enkyukakyuka mu lususu lw’omwana, amagumba, n’ebitundu by’omunda (nga amawuggwe n’ebyenda).
• Okukebera okukebera enkola y’okumira mu nnywanto: Kino kitegeeza okutunuulira enkola ya ttanka etambuza emmere okuva mu kamwa okutuuka mu lubuto.
• Okukebera enkola y’amawuggwe: Okukebera okussa okulaba oba amawuggwe g’omwana gakola bulungi.
• Okukebera omutima (Echocardiography): Laba engeri omutima gw’omwana wo gye gukola.

Ani azuula obulwadde bwa Juvenile Systemic Scleroderma?

Systemic Scleroderma ezuulibwa, erondoolebwa, era n’ejjanjabwa omusawo w’omwana wo, omusawo w’endwadde z’enkizi mukugu mu mbeera zino, omusawo w’ensusu , oba ttiimu y’abasawo abakuguse mu bitundu by’omubiri ebimu (enkola y’okugaaya emmere, omutima, amawuggwe, ensigo).

Obulwadde bwa Juvenile Systemic Scleroderma bujjanjabwa butya?

Ebigendererwa ebikulu eby’obujjanjabi bwa systemic scleroderma kwe kukomya okuzimba, okuziyiza embeera eno okweyongera, n’okuziyiza okwonooneka kw’ebitundu by’omubiri eby’omunda.

Okukuuma olususu

Okukuuma olususu lwo kiyamba omusaayi okutambula obulungi mu lususu lwo n’ebitundu by’omubiri byo. Kino kikulu nnyo naddala eri abaana abalina ekirwadde kya Raynaud . Bino bye bimu ku bintu by’oyinza okukola okukuuma olususu lw’omwana wo:

• Weewale okulumya ebitundu ebikoseddwa naddala engalo n’engalo.Ne bwe kiba nti amaziga amatono gayinza okufuuka ekizibu ekinene.
• Kuuma emikono n’ebigere by’omwana wo okuva ku nnyonta. Ekisenge kikuume nga kibuguma. Mu biseera by’obutiti (mu bitundu ebinyogovu ng’ebitundu eby’ensozi eby’ensi yaffe), omwana wo mwambale engoye ez’enjawulo, gamba ng’enkoofiira eriko ebisiba amatu, emitto, n’amasokisi agabuguma. Ebyoya by’endiga bibuguma okusinga ppamba oba emifaliso egy’obutonde. Ate era kirungi okwambala engoye ennyimpi eziwerako okusinga layeri emu enzito.
• Weewale okunywa sigala oba okussa omwana wo mu ssigala.
• Weewale okuwa omwana wo eddagala ly’ennyonta eririmu ekirungo kya pseudoephedrine.
• Kuuma omwana wo okuva ku musana oguyitiridde. Kozesa eddagala eriziyiza omusana ng’omusawo bw’akulagidde.
• Tokozesa bizigo ebizimba, ebisiimuula omubiri oba mu maaso, oba eby’okunaaba ebikambwe ku lususu lw’omwana wo ebikaza olususu.
• Kozesa ebizigo okukuuma olususu lw’omwana wo nga luweweevu ng’omusawo bw’akulagidde.

Obujjanjabi bw’omubiri

Enteekateeka z’okukola dduyiro ezisookerwako ez’okugolola n’okulung’amibwa, ezikolebwa abakugu mu by’omubiri n’abajjanjabi b’emirimu, zisobola okuyamba okukuuma omwana ng’akyukakyuka, okutambula mu binywa, amaanyi g’ebinywa, n’okutambula kw’omusaayi mu bitundu ebikoseddwa. Enzijanjaba zino era zisobola okuyamba okuziyiza okukonziba kw’ennyondo, nga zino zikaluba nnyondo. Bwe kiba kyetaagisa, omusawo ayinza okukuwa amagezi okukozesa ebisiba oba okusiba ebisiba.

Okuloongoosa

Tekitera nnyo, okulongoosa omukono mu magumba oba okulongoosa mu ngeri ey’okwewunda kuyinza okwetaagisa okutereeza obulema obw’amaanyi mu binywa oba olususu oba enkovu. Wabula nga tebannalongoosebwa, embeera erina okuba mu remission , ekitegeeza nti emaze emyaka egiwerako nga tekola.

Omusawo w’omwana wo ayinza okulowooza ku kusimbuliza obusigo bw’amagumba mu ngeri ey’okwekolako ng’obujjanjabi. Mu kiseera kino obujjanjabi obulala bunoonyezebwa.

Eddagala ki eriweebwa ku Systemic Scleroderma?

Omusawo ayinza okukuwa eddagala ery’enjawulo okujjanjaba embeera y’omwana wo. Okugeza nga:

• Corticosteroids: Kikendeeza ku buzimba mu binywa, ennyondo n’olususu. Steroids era zisobola okuyamba okujjanjaba emitendera egy’olubereberye egy’okuzimba mu bitundu by’omunda. Wabula, steroids zitera obutakola nnyo mu mitendera egy’oluvannyuma egy’obusimu obuyitibwa fibrotic stages of systemic sclerosis.
• Eddagala eriziyiza okuzimba eritali lya steroid (NSAIDs): Okugeza , ibuprofen ne naproxenEddagala nga NSAIDs oluusi likozesebwa okukendeeza ku kuzimba kw’ennyondo mu baana abalina obulwadde bw’endwadde z’enkizi. Wabula olina okwegendereza obutakozesa nnyo ddagala lya NSAID ng’ekibumba kikosezza.
• Eddagala eddala erikyusa abaserikale b’omubiri: Lino liweebwa okukendeeza ku busimu obuziyiza endwadde n’okuziyiza okuzimba n’enkovu eziddirira.
• Eddagala erigaziya emisuwa n’okulongoosa entambula y’omusaayi: Lino likozesebwa okujjanjaba ekizibu kya Raynaud .

Omwana wange bw’aba alina obulwadde bwa Systemic Scleroderma, kiki kye nsuubira?

Tewali ddagala lya njawulo eriwonya obulwadde bwa scleroderma. Kyokka omwana wo osobola okuyamba okuddukanya embeera eno n’okubeera nayo.

Systemic Scleroderma bulwadde obutawona , obuwangaala, era obugenda bugenda mpola. Kiyinza okumala emyezi oba emyaka. Endowooza y’omwana wo esinziira ku ngeri obubonero gye busaasaaniddemu n’obungi bw’omubiri (naddala olususu n’ebitundu by’omunda) ebikoseddwa.

Abaana abalina obuzibu mu mawuggwe, omutima oba ekibumba bali mu bulabe bwa maanyi okufuna ebizibu, gamba ng’okukonziba kw’ennyondo n’okukyusakyusa mu by’okwewunda. Embeera eno era esobola okukosa enkula y’amagumba g’omwana.

Systemic Scleroderma etera obutaggwaawo ddala, naye esobola okusigala ku mutindo gwe gumu okumala emyaka egiwerako nga tegenda kweyongera.

Osobola okumala bbanga ki ng’olina obulwadde bwa Juvenile Systemic Scleroderma?

Obulamu bw’omwana azuuliddwa n’obulwadde bwa Systemic Scleroderma bwawukana okusinziira ku buzibu bw’embeera eno naddala oba ekosezza ebitundu byabwe eby’omunda. Kikulu okwogera n’omusawo wo ku nsonga eno osobole okutegeera obulungi.

Obulwadde bwa Juvenile Systemic Scleroderma busobola okuziyizibwa?

Okuva bwe kiri nti ekivaako ekituufu tekimanyiddwa, tewali ngeri ntongole ey’okuziyiza Systemic Scleroderma.

Nlabirira ntya omwana wange eyazuulibwa nti alina obulwadde bwa Systemic Scleroderma?

Abaana abalina obulwadde bwa Systemic Scleroderma balina okubeera mu bulamu obwa bulijjo nga bwe kisoboka. Balina okugenda ku ssomero, okuzannya, n’okwenyigira mu mirimu. Okutwaliza awamu, tewali kkomo ku bungi bw’emirimu gy’omubiri abaana gye basobola okukola (kasita kiba nga tekirina bulabe). Dduyiro ayamba okuziyiza obunafu n’okwongera amaanyi g’ebinywa, okukyukakyuka n’okugumiikiriza.

Omwana wange mmutwale ddi ew’omusawo?

Omwana wo alina okutwalibwa okwekebejjebwa buli kiseera. Naddala weetegereze obubonero obukosa ebitundu by’omubiri eby’omunda. Omwana wo bw’aba alumizibwa nnyo , afuna obuzibu okutambuza ebitundu by’omubiri gwe, oba ng’alina obubonero obukosa obulamu bwe obwa bulijjo, .Laba omusawo mu bwangu.

Bibuuzo ki bye nnina okubuuza omusawo wange?

Okubuuza ebibuuzo nga bino kijja kukuyamba:

• Embeera y’omwana wange ya maanyi etya?
• Nnyinza ntya okuyamba okukuuma olususu lw’omwana wange awaka?
• Omwana wange yandibadde agenda mirundi emeka mu bujjanjabi bw’omubiri?
• Bubonero ki bwe nnina okwegendereza singa obulwadde bweyongera okusajjuka?
• Omwana wange yeetaaga okulongoosebwa?

Waliwo ebika ebirala eby’obulwadde bwa scleroderma?

Ng’oggyeeko ebika bya Systemic Scleroderma, waliwo ebika bibiri ebikulu ebya Scleroderma. Bbo bali:

• Localized scleroderma: Ekika kino kikwata olususu lwokka mu bitundu by’omubiri ebimu. Era kiyinza okusaasaana mu binywa oba amagumba agali wansi, oba nga tekiriiwo. Tebutera kukwata bitundu bya munda.
• Systemic scleroderma (era emanyiddwa nga systemic sclerosis): Kino kye tubadde twogerako mu kitundu kino kyonna. Mu mbeera eno, olususu lusobola okugonza wonna ku mubiri. Ng’oggyeeko enkyukakyuka mu lususu, ebitundu by’enkovu bisobola okukula mu bitundu by’omunda ng’ensigo, omutima, amawuggwe n’enkola y’omu lubuto. Abaana abalina obulwadde bwa systemic sclerosis bayinza okuba nga tebatambula bulungi mu binywa olw’enkyukakyuka z’olususu ezisaasaana.

Ebintu ebikulu by’olina okujjukira mu kitundu kino

Juvenile Systemic Scleroderma mbeera etatera kubaawo mu baana ereetera olususu okugonza n’okukaluba oluusi n’okukosa ebitundu by’omubiri eby’omunda. Buno bulwadde obuva ku busimu obuziyiza endwadde.

• Obubonero: Okunywezebwa kw’olususu, okuzimba engalo, ekintu kya Raynaud (engalo okukyusa langi mu budde obw’enkuba), okulumwa ennyondo, obuzibu mu kugaaya emmere, n’okukaluubirirwa okussa biyinza okubaawo.
• Ekivaako: Wadde tekimanyiddwa bulungi, kirowoozebwa nti kiva ku baserikale b’omubiri obutakola bulungi n’okukola kolagini ekisusse.
• Obujjanjabi: Fuga obulwadde, okukuuma olususu, okukozesa eddagala ly’omubiri era bwe kiba kyetaagisa n’eddagala. Wadde nga tewali kuwona mu bujjuvu, obubonero busobola okuddukanyizibwa.
• Ekisinga obukulu: Omwana wo bw’aba alina obubonero, genda mangu omusawo amagezi. Kikulu nnyo okusindika omwana wo okwekebejjebwa buli kiseera n’okumuyamba okubeera n’obulamu obwa bulijjo. Tofaayo, osobola okugumira embeera eno ng’oyambibwako abasawo.

` Scleroderma, endwadde z’olususu lw’abaana, okunywezebwa kw’olususu, kolagini, endwadde z’abaserikale b’omubiri, ekintu kya Raynaud, CREST syndrome