Ese uruhu rw'umwana wawe rurimo gukomera no gukomera? Reka tuvuge kuri Scleroderma y'abana!

Ese wabonye ko uruhu rw'umwana wawe rwahindutse gato mu buryo butunguranye? Wenda uruhu rwahindutse ruto, rugakomera, kandi rusa n'aho rutandukanye n'uko rukozweho? Niba ubonye ikintu nk'icyo, wagombye kugira impungenge gato. Kuko, ibi rimwe na rimwe bishobora kuba ikimenyetso cy'indwara yitwa Juvenile Systemic Scleroderma , turimo kuvugaho uyu munsi. Ntugahangayike, tuzabivugaho birambuye.

Scleroderma y'abana (Juvenile Systemic Scleroderma) ni iki?

Mu magambo make, Juvenile Systemic Scleroderma (izwi kandi nka Systemic Sclerosis ) ni indwara aho uruhu rw'umwana wawe rurushaho kuba runini kandi rugakomera kurusha uko bisanzwe. Tekereza ko ari agapapuro k'urushundura gagenda gakura gahinduka nk'ipulasitiki ikomeye. Ntabwo gashyirwa ku ruhu gusa. Hari igihe gashobora no kugira ingaruka ku zindi ngingo ziri mu mubiri w'umwana. Ijambo 'systemic' risobanura ko rishobora kugira ingaruka ku mubiri wose w'umwana.

Iyi ni indwara iterwa n’ubwiyongere bw’umubiri . Ni ukuvuga ko ubwirinzi bw’umubiri wacu, ubudahangarwa bw’umubiri, butangira kwibasira uturemangingo twabwo twiza. Muri iki gihe cya Scleroderma, iyo ubudahangarwa bw’umubiri bwibasiye uturemangingo tw’uruhu muri ubwo buryo, habaho kubyimba cyangwa kubyimba k’uruhu. Kubera uku kubyimba, poroteyine yitwa kolajeni, ituma uruhu rwacu rukomera kandi rugakomera, itangira gukorwa cyane. Nk’uko inkovu ibaho iyo habayeho imvune, uku gusohora kolajeni nyinshi bitera fibrosis cyangwa gukomera k’uruhu.

Ese hari ubwoko bw'ingenzi bwa Systemic Scleroderma?

Yego, hari ubwoko butatu bw'ingenzi. Reka turebe ibyo ari byo.

1. Kurwara indwara yo mu bwoko bwa sclerosis y’uruhu: Muri ubu bwoko, uruhu rw’umwana rurushaho kubyimba umubiri wose. Nanone, hashobora kubaho ibibazo mu mikorere y’ingingo z’imbere z’umubiri. Tekereza, si amaboko, amaguru, n’isura gusa, ahubwo n’ahantu nk’igituza n’igifu bitangira kubyimba.

2. Indwara ya CREST: Iyi ni indwara yihariye. Yitwa kandi CREST syndrome . CREST ni incamake yakozwe no guhuza inyuguti za mbere z'ibintu bitanu by'ingenzi bigize iyi ndwara.

• C - Calcinosis: Ibi bivuze ko kalisiyumu yinjirira munsi y'uruhu igakora utubyimba duto.
• R - Indwara ya Raynaud: Ibi bibaho iyo intoki (amaboko n'ibirenge) bihinduka umweru, ubururu, hanyuma bitukura iyo bihuye n'ubukonje cyangwa iyo umuntu afite stress. Biba bigoye kugena ubushyuhe bw'umubiri.
• E - Kutagenda neza kw'imiyoboro y'amaraso: Ibi bivuze ko umuyoboro utwara ibiryo mu muhogo ukabijyana mu nda (umuyoboro w'amaraso) udakora neza iyo tumira. Ibi bishobora gutera kuribwa mu gifu.Ibintu nk'ibyo bishobora kubaho.
• S - Sclerodactyly: Kubyimba no gukomera k'uruhu rw'intoki. Intoki zishobora kubyimba no gukomera, nk'isosiso.
• T - Telangiectasia: Imitsi mito y'amaraso mu ruhu irakura, ikagaragara nk'udusimba tw'igitagangurirwa cyangwa utudomo dutukura.

3. Scleroderma yo mu mubiri: Iki ni igihe ingingo z'imbere z'umubiri zigira ingaruka nta bukonje cyangwa gukomera k'uruhu. 'Sine scleroderma' bisobanura 'nta scleroderma (gukomera k'uruhu)'. Ibi bivuze ko nubwo nta mpinduka zikomeye zishobora kubaho ku ruhu, ingingo z'imbere zishobora kugira ingaruka.

Ni nde ushobora kurwara Scleroderma y’abana? Ni ku rugero rungana iki?

Iyi ndwara yitwa Juvenile Systemic Scleroderma ishobora kwibasira umuntu wese w’imyaka iyo ari yo yose, hatitawe ku gitsina. Ariko, ni gake cyane ku bana bato, ni ukuvuga abana bari munsi y’imyaka 10, kuyirwara. Ijambo 'juvenile' ubwaryo risobanura ko iyi ari indwara ifata abana. Iyo urebye imibare yo mu gihugu nka Leta Zunze Ubumwe za Amerika, bivugwa ko hari abana bari hagati ya 5.000 na 7.000 barwaye Scleroderma. Hafi 2% by’abaturage bose barwaye Scleroderma bibasirwa n’iyi ndwara mbere y’imyaka 10. Abandi 7% bahura n’iyi ndwara bari hagati y’imyaka 10 na 19. Rero, iyi ndwara ifatwa nk’indwara idakunze kugaragara .

Ni ibihe bimenyetso bya Scleroderma y’abana?

Muri iyi ndwara, ibimenyetso bishobora kugira ingaruka ku ruhu rw'umwana no ku ngingo ze z'imbere. Byongeye kandi, abana benshi barwaye Systemic Scleroderma bahura n'ikibazo cyitwa Raynaud's phenomenon .

Ibimenyetso bigira ingaruka ku ruhu no ku ngingo

Ubwa mbere, reka turebe uburyo ibi bigira ingaruka ku ruhu n'ingingo zifitanye isano narwo:

• Uruhu rutakaza ubushobozi bwarwo bwo kwiyoroshya. Ruba rubi, rufunganye, kandi ntirube rwiza.
• Imikorere y'amaboko iragabanuka. Uruhu rurakomera cyane cyane mu ntoki no mu biganza, bigatuma bigorana kunama amaboko no gufata ibintu.
• Imitsi itukura igaragara ku ruhu, cyane cyane ku biganza, mu maso no hafi y'inzara (telangiectasias). Iyi mitsi ishobora kumera nk'udusimba duto tw'igitagangurirwa.
• Calcinosis ni ukuvuka kw'utubyimba duto tw'utubyimba twa kalisiyumu munsi y'uruhu cyangwa ahandi hantu. Rimwe na rimwe bishobora kugorana.

Mu ntangiriro, uruhu rwo ku biganza no ku birenge rushobora kugaragara nk'urubyimbye kandi rwagutse. Uko igihe kigenda gihita, uruhu rw'umwana rushobora gukomera, rukabyimba, kandi rushobora kugira iminkanyari, ahantu habitse, cyangwa utwobo duto. Urugero, intoki za bamwe mu bana zishobora kubyimba nk'isosiso, hanyuma zigakomera kandi zigasa neza.

Ibimenyetso bigira ingaruka ku ngingo z'imbere

Scleroderma yo mu mubiri ishobora no kugira ingaruka ku ngingo z'imbere z'umwana. Ibimenyetso bishobora kuba birimo:

• Kubyimba ingingo, kunanuka, no kubabara. Nk'ingingo zifata ingingo.
• Ibisebe ku rutoki. Ibi bisebe bifata igihe kirekire kugira ngo bikire.
• Ibibazo by'igogora. Urugero, kuribwa mu gifu, kugorwa no kumira, kwituma mu buryo butunguranye (diarrhea), no kuribwa mu nda.
• Ibibazo byo guhumeka. Ushobora kugira inkorora idashira cyangwa guhumeka bigoranye.
• Ibibazo by'impyiko. Ibi bishobora kandi gutera umuvuduko ukabije w'amaraso (hypertension) .
• Kumva unaniwe igihe cyose. Kunanirwa vuba nubwo wamaze gukora ikintu gito.
• Intege nke z'imitsi.

Akenshi, iyi ndwara ntabwo ibabaza. Kubwibyo, bamwe mu bana bashobora kutamenya ko barwaye Scleroderma. Niyo mpamvu umwana urwaye Sclerosis isanzwe agomba kujya kwa muganga buri gihe kugira ngo arebe niba afite umuvuduko ukabije w'amaraso, ibihaha, impyiko, indwara z'igifu n'umutima.

Ikintu cya Raynaud cyabaye

Iki ni ikimenyetso kidasanzwe. Indwara ya Raynaud ni iyo intoki z'umwana n'amano bye bihindura ibara iyo ahuye n'ubukonje cyangwa iyo afite stress. Ubwa mbere bihinduka umweru , hanyuma ubururu , amaherezo bihinduka umutuku . Iki ni ikimenyetso gishobora kugaragara mu ntangiriro z'indwara. Hari igihe iki gishobora kuba ikimenyetso cya mbere cy'uko indwara ya Sclerosis ihari.

Izindi bimenyetso bishobora kugaragara ku ndwara ya Raynaud harimo:

• Kumva unaniwe igihe cyose
• Ububabare bw'ingingo
• Kugorwa no kumira ibiryo
• Kubabara mu nda
• Kubyimba mu gituza
• Impiswi
• Guhumeka bigoranye

Kuki habaho Scleroderma y’abana (Juvenile Systemic Scleroderma)?

Mu by’ukuri, impamvu nyayo ya Scleroderma y’abana ntabwo iramenyekana . Ariko, ubushakashatsi bwagaragaje ko kwangirika kw’uturemangingo turi imbere mu miyoboro y’amaraso bituma uturemangingo tw’umubiri duhuza uruhu, twitwa fibroblasts, dukora cyane. Utu turemangingo ni uturemangingo dukora poroteyine nka kolajeni. Bityo rero, ibimenyetso bya Scleroderma y’umubiri biterwa n’uko kolajeni ikorwa cyane.

Kuki uruhu rw'umwana rufunganye cyane?

Muri Scleroderma yo mu bwoko bwa Systemic, uruhu rurakomera bitewe n'ubwinshi bwa poroteyine yitwa kolajeni mu ngingo z'umwana. Nkuko twabiganiriyeho mbere, akazi k'ubudahangarwa bw'umubiri ni ukurinda umubiri kwandura indwara n'ibindi. Ariko, ku mwana urwaye Scleroderma, ubudahangarwa bw'umubiri burakora cyane bukagerageza kurinda umubiri ukoresheje uturemangingo twabwo twiza - ni ukuvuga ko bwibasira uturemangingo twabwo . Kubera iyo mpamvu, uturemangingo tw'umwana dutangira gukora kolajeni nyinshi cyane. Iyi kolajeni irenze ishyirwa mu ruhu rw'umwana no mu ngingo ze z'imbere, bigatuma igaragara nk'inkovu ikomeye kandi ikomeye, nk'inkovu.

Ni gute indwara ya Scleroderma ipimwa?

Muganga w'umwana wawe azasuzuma indwara ya Scleroderma yo mu bwoko bwa Systemic Scleroderma akurikije ibintu byinshi.

• Ibimenyetso n'ibimenyetso bifatika, nko kubyimba k'uruhu no guhinduka kw'intoki.
• Impinduka zihariye ku ruhu, nko kugira ahantu hanini, ingano yabyo, imiterere yabyo, n'ibara ryabyo.
• Amateka yuzuye y'ubuzima n'isuzuma ry'umubiri bizatanga amakuru ajyanye n'indwara umwana yari afite mbere ndetse niba hari uwo mu muryango wigeze kugira indwara nk'izo.

Ni ibihe bipimo bikoreshwa mu gusuzuma Scleroderma yo mu bwoko bwa Systemic?

Ibizamini bitandukanye bikorwa kugira ngo hamenyekane izindi ndwara zisa na scleroderma, kugira ngo hamenyekane uburyo scleroderma ikora, no kugira ngo hamenyekane niba izindi ngingo zitari uruhu zarafashwe. Ibizamini bya poroteyine zikora ubudahangarwa bw'umubiri bishobora gutanga igitekerezo cy'uko indwara igenda. Ni gake cyane abaganga bakora biopsy y'uruhu .

Dore ibindi bizamini bya Scleroderma yo mu bwoko bwa Systemic:

• Ibipimo by'amaraso: Pima urugero rwa poroteyine zikora mu mubiri w'umuntu ndetse n'imikorere y'impyiko.
• Ibipimo bya X-ray: Reba impinduka mu ruhu rw'umwana, mu magufwa ye, no mu ngingo ze z'imbere (nk'ibihaha n'amara).
• Ibizamini byo kugenzura uburyo bwo kumira mu muhogo: Ibi bivuze kureba imikorere y'umuyoboro utwara ibiryo mu kanwa ukabijyana mu nda.
• Ikizamini cy'imikorere y'ibihaha: Ikizamini cyo guhumeka kugira ngo harebwe niba ibihaha by'umwana bikora neza.
• Ultrasound y'umutima (Echocardiography): Reba uko umutima w'umwana wawe ukora.

Ni nde usuzuma indwara ya Scleroderma y’abana?

Scleroderma yo mu bwoko bwa Systemic irasuzumwa, igakurikiranwa, kandi ikavurwa n'umuganga w'umwana wawe, inzobere mu ndwara zo mu bwonko wihariye muri izi ndwara, inzobere mu ndwara z'uruhu , cyangwa itsinda ry'abaganga bihariye mu bice bimwe na bimwe by'umubiri (urusobe rw'igogora, umutima, ibihaha, impyiko).

Indwara ya Scleroderma y’abana ivurwa ite?

Intego nyamukuru zo kuvura scleroderma mu mubiri ni uguhagarika ububyimbirwe, gukumira ko iyo ndwara ikomeza kwiyongera, no gukumira kwangirika kw'ingingo z'imbere mu mubiri.

Kurinda uruhu

Kurinda uruhu rwawe bifasha mu gutuma amaraso atembera neza mu ruhu rwawe no mu ngingo zawe. Ibi ni ingenzi cyane cyane ku bana bafite ikibazo cya Raynaud . Dore bimwe mu bintu wakora kugira ngo urinde uruhu rw'umwana wawe:

• Irinde gukomeretsa ahantu hagize ikibazo, cyane cyane intoki n'amano.Ndetse n'agahinda gato gashobora kuba ikibazo gikomeye.
• Rinda amaboko n'ibirenge by'umwana wawe ubukonje. Komeza icyumba gishyushye. Mu gihe cy'itumba (mu turere dukonje cyane nko mu misozi miremire y'igihugu cyacu), ambika umwana wawe indi myenda, nk'ingofero ifite utubati two mu matwi, imifariso, n'amasogisi ashyushye. Ubwoya bushyuha kurusha ipamba cyangwa imyenda ya sintetike. Nanone, ni byiza kwambara imyenda myinshi yoroheje kuruta urwego rumwe runini.
• Irinde kunywa itabi cyangwa gushyira umwana wawe mu kaga.
• Irinde guha umwana wawe imiti ishyushye irimo pseudoephedrine.
• Rinda umwana wawe ku zuba ryinshi. Koresha imiti irinda izuba nk'uko muganga yabigusabye.
• Ntugakoreshe imiti igabanya ububabare, isukura umubiri cyangwa isura, cyangwa isabune ikomeye ku ruhu rw'umwana wawe ikamunga uruhu.
• Koresha amavuta yo kwisiga kugira ngo uruhu rw'umwana wawe rukomeze kuba rwiza nk'uko muganga yabigutegetse.

Ubuvuzi bw'umubiri

Gahunda z'ibanze zo kunanura imitsi no gukora imyitozo ngororamubiri, zikorwa n'abaganga b'imitsi n'abaganga b'inzobere mu by'ubuzima, zishobora gufasha umwana gukomeza koroherwa no kwihuta, kugira ngo ingingo ze zigire aho zinyura, kugira ngo imitsi ikomere, ndetse n'amaraso atembera neza mu bice byangiritse. Ubu buryo bwo kuvura bushobora kandi gufasha gukumira guhagarara kw'ingingo, ari byo bituma ingingo zikomera. Iyo bibaye ngombwa, muganga ashobora kumusaba gukoresha imigozi cyangwa ibyuma bifasha mu gufunga ingingo.

Kubaga

Ni gake cyane, kubagwa intoki cyangwa kubagwa ubwiza bishobora kuba ngombwa kugira ngo hakosorwe ubumuga bukomeye bw'ingingo cyangwa uruhu cyangwa inkovu. Ariko, mbere yo kubagwa, ikibazo kigomba kuba kiri mu gihe cyo kugabanuka , bivuze ko kimaze imyaka myinshi kidakora.

Muganga w'umwana wawe ashobora gutekereza ko gutera umwongo w'amagufwa mu buryo bwa autologous ari uburyo bwo kuvura. Ubundi buryo bwo kuvura burimo gukorwaho ubushakashatsi.

Ni iyihe miti itangwa kuri Scleroderma yo mu bwoko bwa Systemic?

Muganga wawe ashobora kuguha imiti itandukanye yo kuvura indwara y'umwana wawe. Urugero:

• Corticosteroids: Igabanya ububyimbirwe mu mitsi, ingingo n'uruhu. Steroids ishobora kandi gufasha kuvura ibyiciro bya mbere by'ububyimbirwe mu ngingo z'imbere. Ariko, steroids akenshi ntizigira akamaro cyane mu byiciro bya nyuma bya sclerosis y'umubiri.
• Imiti igabanya ubushyuhe itari iya steroide (NSAIDs): Urugero , ibuprofen na naproxenImiti nka NSAIDs rimwe na rimwe ikoreshwa mu kugabanya ububyimbirwe bw'ingingo ku bana barwaye rubagimpande. Ariko, hakwiye kwitonderwa kudakoresha NSAIDs cyane iyo imikorere y'impyiko yangiritse.
• Indi miti igabanya ubudahangarwa bw'umubiri: Iyi itangwa kugira ngo igabanye uburyo ubudahangarwa bw'umubiri butera no gukumira kubyimba no gutera inkovu nyuma yaho.
• Imiti yagura imiyoboro y'amaraso kandi igatuma amaraso atembera neza: Iyi ikoreshwa mu kuvura indwara ya Raynaud .

Niba umwana wanjye afite Scleroderma yo mu bwoko bwa Systemic, ni iki nakwitega?

Nta muti wihariye wa scleroderma. Ariko, ushobora gufasha umwana wawe kwihanganira iyo ndwara no kuyihanganira.

Scleroderma yo mu bwoko bwa Systemic ni indwara idakira , imara igihe kirekire, kandi igenda ikura buhoro buhoro. Ishobora kumara amezi cyangwa imyaka. Uko umwana abibona biterwa n'uburyo ibimenyetso byakwirakwiriye ndetse n'uburyo umubiri we (cyane cyane uruhu n'ingingo zo mu nda) byangiritse.

Abana bafite ibibazo by'ibihaha, umutima, cyangwa impyiko bafite ibyago byinshi byo kugira ibibazo, nko gucika kw'ingingo no guhinduka kw'imiterere. Iyi ndwara ishobora no kugira ingaruka ku mikurire y'amagufwa y'umwana.

Scleroderma yo mu bwoko bwa Systemic ikunze kudashira burundu, ariko ishobora kuguma ku rwego rumwe imyaka myinshi idakomeza kuba mibi.

Ushobora kumara igihe kingana iki urwaye Scleroderma y’abana?

Imyaka yo kubaho k'umwana urwaye Scleroderma yo mu bwoko bwa Systemic iratandukanye bitewe n'uburemere bw'iyi ndwara, cyane cyane niba yaragize ingaruka ku ngingo ze z'imbere. Ni ngombwa kuvugana na muganga wawe kuri ibi kugira ngo usobanukirwe neza.

Ese Scleroderma y’abana ishobora kwirindwa?

Kubera ko impamvu nyayo itazwi, nta buryo bwihariye bwo kwirinda Scleroderma yo mu bwoko bwa Systemic buhari.

Ni gute nakwita ku mwana wanjye wasanzwe arwaye Scleroderma yo mu bwoko bwa Systemic?

Abana barwaye Scleroderma yo mu bwoko bwa Systemic Scleroderma bagomba kubaho ubuzima busanzwe uko bishoboka kose. Bagomba kujya ku ishuri, gukina no kwitabira imyitozo ngororamubiri. Muri rusange, nta mbibi ku ngano y'imyitozo ngororamubiri abana bashobora gukora (igihe cyose ari mu mutekano). Imyitozo ngororamubiri ifasha kwirinda intege nke no kongera imbaraga z'imitsi, ubushobozi bwo koroherwa no kwihangana.

Ni ryari nkwiye kujyana umwana wanjye kwa muganga?

Umwana wawe agomba kujya kwisuzumisha buri gihe. Cyane cyane reba ibimenyetso bigira ingaruka ku ngingo z'imbere. Niba umwana wawe afite ububabare bukabije , afite ingorane zo kwimuka kw'ibice by'umubiri we, cyangwa afite ibimenyetso bigira ingaruka ku buzima bwe bwa buri munsi,Shaka muganga ako kanya.

Ni ibihe bibazo ngomba kubaza muganga wanjye?

Kubaza ibibazo nk'ibi bizagufasha:

• Indwara y'umwana wanjye ikomeye gute?
• Ni gute nafasha mu kurinda uruhu rw'umwana wanjye mu rugo?
• Umwana wanjye agomba kujya muri physiotherapy kangahe?
• Ni ibihe bimenyetso ngomba kwitondera iyo indwara ikomeje kwiyongera?
• Ese umwana wanjye akeneye kubagwa?

Ese hari ubundi bwoko bwa scleroderma?

Uretse ubwoko bwa Scleroderma yo mu bwoko bwa Systemic, hari ubwoko bubiri bw'ingenzi bwa Scleroderma. Ubwo bwoko ni:

• Scleroderma yo mu gace runaka: Ubu bwoko bw'indwara yibasira uruhu rwo mu bice bimwe na bimwe by'umubiri gusa. Ishobora no gukwirakwira mu mitsi cyangwa amagufwa yo munsi, cyangwa ikaba idahari. Ntikunze kwibasira ingingo z'imbere.
• Scleroderma yo mu bwoko bwa Systemic (izwi kandi nka systemic sclerosis): Ibi nibyo twavuzeho muri iyi nkuru. Muri iyi ndwara, uruhu rushobora kwiyongera ahantu hose ku mubiri. Uretse impinduka z'uruhu, inkovu zishobora kuvuka mu ngingo z'imbere nko mu mpyiko, mu mutima, mu bihaha no mu gifu. Abana bafite scleroderma yo mu bwoko bwa Systemic sclerosis bashobora kugira ikibazo cyo kugabanuka kw'ingingo bitewe n'impinduka z'uruhu zikwirakwira.

Ibintu by'ingenzi ugomba kwibuka muri iyi nkuru

Indwara ya Scleroderma y’abana ni indwara idakunze kugaragara mu bana ituma uruhu rukomera kandi rugakomera, rimwe na rimwe rugafata ingingo z’imbere. Ni indwara iterwa n’ubwiyongere bw’umubiri.

• Ibimenyetso: Gukomera k'uruhu, kubyimba intoki, indwara ya Raynaud (intoki zihindura ibara mu gihe cy'ubukonje), kubabara ingingo, ibibazo byo mu igogora, no guhumeka bigoranye bishobora kubaho.
• Impamvu: Nubwo itazwi neza, bikekwa ko iterwa n'uko ubudahangarwa bw'umubiri budakora neza ndetse n'umusaruro mwinshi wa kolajeni .
• Uburyo bwo kuvura: Kugenzura indwara, kurinda uruhu, gukoresha ubuvuzi bw'umubiri, ndetse nibiba ngombwa, n'imiti. Nubwo nta muti wuzuye uhari, ibimenyetso birashoboka gukemurwa.
• Icy'ingenzi kurushaho: Niba umwana wawe afite ibimenyetso, shaka ubufasha bwa muganga vuba. Ni ngombwa cyane kohereza umwana wawe kugira ngo ajye kwisuzumisha kwa muganga buri gihe no kumufasha kubaho ubuzima busanzwe. Ntugahangayike, ushobora guhangana n'iki kibazo ubifashijwemo n'abaganga.

Scleroderma , indwara z'uruhu z'abana, gufunga uruhu, kolajeni, indwara zifata ubudahangarwa bw'umubiri, indwara ya Raynaud, indwara ya CREST