Ese umwana wawe afite uduce twijimye kandi twahinduye ibara ku ruhu rwe? (Youvenile Localized Scleroderma)

Ese wigeze ubona ikintu ku mubiri w'umwana wawe, wenda ku kuguru cyangwa ku nda, gihinduka ibara mu buryo butunguranye kikumva kigoranye kugikoraho? Nk'umubyeyi, ushobora kuba warumvise ufite ubwoba kandi uhangayitse ubwo wabonaga. "Iki ni iki? Kuki ibi byabaye?" Ushobora kuba waratekereje. Ntutinye. Kenshi na kenshi, iyi ndwara ishobora guterwa n'indwara tuvuga uyu munsi, `Juvenile Localized Scleroderma`. Nubwo izina rigoye gato, reka tubiganireho mu buryo bworoshye, mu buryo ushobora kumva.

Mu magambo make, ni iki kitwa Juvenile Localized Scleroderma?

Reka dutangire n'izina. Ijambo `Scleroderma` rigizwe n'amagambo abiri y'Ikigiriki: "sclera" bivuga 'gukomera', na "derma" bivuga 'uruhu'. Bisobanura gusa "uruhu rukomeye" . "Ibyari byoroshye" ni ukubera ko bibaho mu bana no mu rubyiruko. "Localized" ni ukubera ko bigarukira gusa ku bice bimwe na bimwe by'umubiri, ni ukuvuga uruhu, ingingo ziri munsi y'uruhu, ndetse rimwe na rimwe n'imitsi n'amagufwa. Irindi zina ry'ibi ni `Morphea`.

Iyi ni indwara iterwa n’ubwiyongere bw’umubiri . Mu magambo make, ubwirinzi bw’umubiri wacu, ubudahangarwa bw’umubiri, buragenda busaza gato bugatangira kwibasira uruhu rwabwo ruzima. Mu gusubiza iki gitero, uruhu rw’umwana rutangira kubyimba, cyangwa rukabyimba.

Uku kubyimba bituma uturemangingo tw’umubiri duhuza uruhu dukora poroteyine nyinshi yitwa 'collagen' . 'Collagen' ni ikintu giha imbaraga n'ubudahangarwa ingingo nyinshi mu mubiri, harimo n'uruhu rwacu. Ariko iyo yiyongereye cyane, nk'inkovu nyuma yo gukomereka, uruhu rurakomera kandi rugakomera. Ibi kandi tubyita 'fibrosis' . Ushobora kubibona ku mubiri w'umwana wawe nk'ahantu hakomeye kandi hahindutse ibara nk'aha.

Ni ubuhe bwoko bw'ingenzi bw'iyi ndwara?

Hari ubwoko bwinshi bw'ingenzi bwa Localized Scleroderma. Buri bwoko bufite ibimenyetso bitandukanye gato. Reka turebe ibyo ari byo.

Ubwoko bwihariye: "En coup de saber"

Iyi ni ubwoko bwa `Linear Morphea`. Iyo umwana agize utu duheri tumeze nk'imirongo ku maso cyangwa ku mutwe, tumwita "en coup de sabre." Iri ni ijambo ry'Igifaransa risobanura "nk'aho yaciwe n'inkota." Kubera ko isa n'umurongo wahinduye ibara, rimwe na rimwe umanuka mu gahanga.

Ni ibihe bimenyetso umwana agaragaza?

Ibi bimenyetso bishobora guhinduka uko igihe kigenda gihita. Bishobora gutangirira ku gace gato kameze nk'igisebe.

• Intambwe ya mbere: Hagaragara ibara ry'umutuku cyangwa umuhengeri ku ruhu rw'umwana. Muri iki cyiciro, uruhu ntiruba rukomeye kandi rusa n'aho rumeze nk'uko bisanzwe.
• Icyiciro cyo hagati: Uko igihe kigenda gihita, icyo kintu kiba gikomeye, kibyimba, kandi kikagira ubunini buto. Hagati muri icyo kintu kiba umweru cyangwa umuhondo, gihinduka nk'ibishashara, kandi kirabagirana. Hashobora kuba hari ishusho y'umutuku cyangwa iy'umuhengeri hafi yacyo.
• Nyuma: Uko igihe kigenda gihita, nyuma y’uko ububyimbirwe bugabanutse, uruhu rwafashwe rushobora guhinduka umukara (hyperpigmented) cyangwa umweru (hypopigmented). Hari igihe uruhu narwo rushobora kunanuka.

Mu bihe bikomeye, ibi byatsi bishobora kugira ingaruka ku ngingo zo mu nda, bigatera ibimenyetso nka:

• Ububabare n'ububabare.
• Kudashobora kwimura amaguru n'imitsi neza.
• Iyo bigaragaye mu maso, bishobora gutera ibibazo by'amenyo cyangwa amaso.

Kuki abana babyitwaramo?

Mu by'ukuri, impamvu nyayo y'ibi ntiraboneka , ariko abaganga bemeza ko bishobora guterwa n'ibintu bitandukanye.

Igikuru ni uko, nk'uko twabivuze mbere, ubudahangarwa bw'umubiri bukora . Byongeye kandi, hari ibintu bimwe na bimwe bifitanye isano n'ibidukikije, urugero nk'ubwandu, gukomereka ku ruhu, n'ibindi bikekwa ko ari byo bitera iyi ndwara. Ariko iyi si indwara yandura.

Ni gute umuganga asuzuma ibi?

Iyo ujyanye umwana wawe kwa muganga, ikintu cya mbere azakora ni ukumusuzuma witonze no kukubaza ibimenyetso. Akenshi ushobora gukeka niba ari 'Localized Scleroderma' urebye imiterere y'uduheri ku ruhu.

Kugira ngo wemeze ko indwara yanduye, ushobora no gukenera gukora ibizamini nk'ibi bikurikira:

• Isuzuma ry'uruhu: Ibi bikubiyemo gufata agace gato cyane k'uruhu rwangiritse no kugasuzuma hifashishijwe mikorosikopi. Ibi bidufasha kubona neza impinduka zabaye mu turemangingo tw'uruhu.
• MRI scan (Magnetic Resonance Imaging): Ibi bishobora kureba uburyo ibisebe by'uruhu byageze kure ndetse niba imitsi cyangwa amagufwa yo hasi yarangiritse.

Ni ubuhe buryo bwo kuvura ibi?

Intego nyamukuru z'ubuvuzi ni ukurwanya kubyimba (inflammation) mu ruhu, guhagarika indwara gukomeza gukwirakwira, no kugabanya inkovu (fibrosis) ku ruhu. Ubuvuzi buterwa n'ubwoko n'uburemere bw'indwara ku mwana.

Hari uburyo butandukanye bwo kuvura:

• Corticosteroids: Izi zishobora gutangwa nk'amavuta yo kwisiga, ibinini byo kunywa, cyangwa inshinge zo mu mitsi.
• Andi moko y'amavuta yo kwisiga ku ruhu: Amavuta arimo imiti nka `Calcipotriene`, `tacrolimus`, `pimecrolimus`.
• Imiti igabanya ubukana bw'umubiri: Iyo indwara ikomeye cyane, imiti nka `Methotrexate` cyangwa `Mycophenolate Mofetil` iratangwa kugira ngo igenzure imikorere y'ubudahangarwa bw'umubiri ikabije.
• Ubuvuzi bw'umubiri n'amasaji: Ibi ni ingenzi cyane mu gukomeza imitsi no gukomeza kugenda neza kw'ingingo, cyane cyane mu bihe nka 'Linear Morphea'.
• Ubuvuzi bworoheje (Phototherapy):Ubu buryo bwo kuvura bukoresha imirasire ya ultraviolet kugira ngo bworoshye utudomo twijimye ku ruhu. Ariko, ibi bishobora gutera gusaza k'uruhu cyangwa kanseri y'uruhu, bityo muganga azabisobanura neza.
• Kubaga uruhu: Iyo indwara ibaye burundu, umuntu ashobora kubaga kugira ngo uruhu rusubire kumera neza.

Ni gute wowe nk'umubyeyi wafasha umwana wawe?

Uretse ubuvuzi, hari ibintu byinshi ushobora gukora mu rugo kugira ngo urinde uruhu rw'umwana wawe.

• Irinde gukoresha amasabune n'isabune zikaze: Ibikoresho birimo impumuro nyinshi bishobora gutuma uruhu rw'umwana wawe rwumuka kandi rukaryana.
• Koresha amavuta yo kwisiga afasha uruhu kwisiga: Siga amavuta meza yo kwisiga akwiriye uruhu rworoshye inshuro nyinshi ku munsi.
• Oga mu mazi y'akazuyazi: Irinde amazi ashyushye cyane cyangwa akonje cyane.
• Irinde izuba: Menya neza ko wisiga amavuta meza yo kwisiga ku zuba igihe ugiye hanze.
• Gumanura ubushuhe mu rugo rwawe: Niba ikirere cyumye, gukoresha icyuma gifasha guhumeka bishobora gufasha kwirinda uruhu rwumye.

Ni gute iki kibazo bigira ingaruka ku buzima bw'umwana?

Nubwo ibi bishobora kugutera ubwoba, ukuri ni uko abana barwaye Scleroderma yo mu bwoko bwa Juvenile Localized bashobora kubaho ubuzima busanzwe .

Nta mbogamizi umwana afite yo kujya ku ishuri, gukina n'inshuti, gukina siporo, no kwitabira ibikorwa by'umuryango nkuko bisanzwe. Mu by'ukuri, gukora siporo ni byiza kuko bikomeza imitsi. Nta mpamvu yo kurya ibiryo n'ibinyobwa byihariye, gutanga indyo yuzuye gusa birahagije.

Hari igihe, ibizinga ku ruhu bishobora gutuma umwana yumva amerewe nabi kandi akagira isoni muri sosiyete. Muri ibyo bihe, inshingano zawe nk'umubyeyi ni ukuganira n'umwana mu rukundo, ukamwumvisha ko atari ikosa rye, no kubaka icyizere cye.