Ese umwana wawe yarwaye ikibyimba gito ku mubiri we? Cyangwa uduheri ku ruhu cyangwa uduheri dusharira tutakira? Hari igihe ibi biba ari ibisanzwe, ariko gake cyane bishobora kuba ibimenyetso by'indwara idakunze kugaragara yitwa Langerhans Cell Histiocytosis (LCH). Ni ibisanzwe kumva ufite ubwoba iyo wumvise iri zina, kuko atari ikintu tumenyereye kumva. Ariko ntugahangayike, reka tubiganireho mu magambo make.
Mu magambo make, LCH ni iki?
Tekereza umubiri wacu nk'igihugu kinini. Hari ingabo zo kurinda iki gihugu, kandi ni bwo budahangarwa bwacu bw'umubiri . Ubwoko bwihariye bw'umusirikare muri iki gisirikare bwitwa Langerhans cells . Utu turemangingo ni ubwoko bw'uturemangingo tw'amaraso. Akazi kabo nyamukuru ni ukurwanya mikorobe n'indwara zinjira mu mubiri wacu zikaturinda indwara. Aba basirikare baboneka mu mubiri wacu wose, cyane cyane mu ruhu, mu bihaha, mu mitsi, mu musemburo w'amagufwa, mu muhogo no mu mwijima.
Ariko ku birebana na LCH, utwo turemangingo twa Langerhans twiyongera mu buryo butunguranye kandi tukirundanya mu bice bitandukanye by'umubiri. Ni nk'umukumbi w'abasirikare bahagaze ahantu hamwe nta ntambara barwana. Iyo birundanyije gutya, batangira kwangiza ingingo nzima ziri muri izo hantu. Ibisebe biba muri izo hantu.
Inkuru nziza kuri iyi ndwara ni uko abana benshi bashobora gukira burundu iyo bavuwe neza. Hari igihe, cyane cyane iyo bigira ingaruka ku ruhu gusa, bishobora kwiyahura ubwabyo nta buvuzi na bumwe. Ariko, iyo izi selile zigira ingaruka ku ngingo z'ingenzi nk'umusemburo w'amagufwa, urwagashya cyangwa umwijima, hashobora kuba ngombwa ko habaho ubuvuzi bukomeye.
Ese kanseri ya LCH ni kanseri?
Iki ni ikibazo abantu benshi bafite. Mu by’ukuri, haracyari ukutumvikana hagati y’abaganga kuri iki kibazo. Abashakashatsi benshi bafata LCH nk’indwara isa na kanseri, ni ukuvuga ingirabuzimafatizo . Ni ukuvuga gukura kudasanzwe kw’uturemangingo. Ariko abandi batekereza ko ari indwara itera ububyimbirwe bw’ubudahangarwa bw’umubiri.
Ariko, LCH ivurwa n'abaganga b'inzobere mu kuvura kanseri, bihariye mu kuvura kanseri n'indwara z'amaraso. Hari igihe imiti irwanya kanseri nka chimiotherapie nayo ikoreshwa mu kuyivura.
Ni nde ufite amahirwe menshi yo kurwara iyi ndwara?
LCH ikunze kugaragara mu bana bavutse n'abana bari hagati y'imyaka 1 na 15. Abantu bakuru ni gake cyane, ariko ntibishoboka.
Imibare igaragaza ko muri buri mwana uvuka umwe cyangwa babiri gusa muri miliyoni bavukana iyi ndwara buri mwaka. Ibi bivuze ko ari indwara ikunze kugaragara .
Ni ibihe bimenyetso bya LCH?
LCH ntigira ingaruka ku bana bose mu buryo bumwe. Nubwo bamwe mu bana bashobora kugira igice kimwe cy'umubiri wabo cyangiritse, abandi bashobora kugira ibice byinshi by'umubiri wabo byangiritse. Kubwibyo, ibimenyetso biratandukanye bitewe n'igice cy'umubiri cyangiritse. Reka turebere hamwe ibyo ari byo.
| Igice cy'umubiri cyagize ingaruka | Ibimenyetso bishobora kugaragara |
|---|---|
| Amagufwa | LCH igira ingaruka ku magufwa mu barwayi bagera kuri 80%. Ikibyimba cyangwa kubyimba bishobora kugaragara ahantu nko mu gahanga, mu magufwa akikije amaso, inyuma y'amatwi, mu rwasaya, mu maguru, mu mugongo no mu kibuno. Ububabare bushobora kugaragara cyangwa budahari. Byongeye kandi, hari ububabare bwo kuribwa umutwe, kubabara mu ijosi/umugongo, kugorwa no kugenda, no gucumbagira. |
| Uruhu | Ibisebe bikunze kugaragara cyane ni ibisebe ku ruhu. Umupfundikizo wo mu kibuno ushobora kuba indwara idakira igaragara ku mutwe w'umwana. Ibisebe bitukura kandi bifite ibisebe bishobora kugaragara ku kibuno, mu kwaha, mu nda, mu gituza no mu mugongo. Ibi bishobora kuva amazi bikarya cyangwa bikaba byababaza. Inzara zishobora kandi guhindura ibara cyangwa zikagwa. |
| Umunwa | Amenyo arekuye cyangwa arekuye, amenyo agabanuka, ishinya ribyimbye, ibisebe ku minwa, ku rurimi, mu matama, cyangwa hejuru y'umunwa. |
| Umwijima cyangwa Impatwe | Umwijima cyangwa urwagashya bishobora gutera kubyimba inda, gushya kw'amaso n'uruhu (jaundice), kuribwa, umunaniro ukabije, no gucika intege cyangwa kuva amaraso byoroshye. |
| Umwobo w'amagufwa | Kubura amaraso, kutagira uruhu, umunaniro, no kubura ubushake bwo kurya bitewe no kugabanuka k'uturemangingo dutukura mu maraso. Kwandura indwara kenshi no kugira umuriro bitewe no kugabanuka k'uturemangingo tw'umweru mu maraso. Gukomereka byoroshye bitewe no kugabanuka k'uturemangingo tw'amaraso. |
| Sisitemu y'imisemburo (Sisitemu y'imisemburo - Imisemburo) | Iyo ingirabuzimafatizo ya pituitary igize ikibazo: inyota nyinshi no kwihagarika kenshi (diyabete insipidus), kudakura neza, ubwangavu bukiri kare cyangwa butinze, kwiyongera ibiro. Iyo ingirabuzimafatizo ya tiroyide igize ikibazo: kubyimba kw'ingirabuzimafatizo, kugorwa no guhumeka. |
| Amatwi | Kwandura indwara zo mu matwi kenshi, kuva mu matwi, gutukura kw'ugutwi, kuribwa mu matwi, kubabara mu matwi no kubura amatwi. |
| Amaso | Amaso abyimbye, kubyimba hejuru y'amaso, kutabona neza. |
| Utunyangingo tw'imitsi | Kubyimba no kubabara mu bibyimba (ibibyimba) mu ijosi, mu kwaha, cyangwa mu kibuno. |
| Uturemangingo tw'imitsi two hagati | Kuribwa umutwe, kuzungera, kuruka, kugorwa no kugenda, kubura uburinganire (ataxia), kugorwa no kuvuga cyangwa kubona, gucika intege, impinduka mu myitwarire no mu kwibuka. |
| Ibihaha | Ibi bikunze kugaragara mu bantu bakuru, cyane cyane abanywa itabi. Kubabara mu gituza, inkorora yumye, guhumeka bigoranye, kugwa kw'ibihaha (pneumothorax). |
| Uburyo bwo mu gifu | Kubabara mu gifu, kuruka, impiswi, amaraso mu mwanda, no kudakura neza bitewe n'ibura ry'indyo. |
Icy'ingenzi ni uko ibi bimenyetso bishobora no kugaragara mu zindi ndwara nyinshi zisanzwe. Ntugatinye LCH kubera ko ufite kimwe cyangwa bibiri muri ibi bimenyetso. Ariko niba ibi bimenyetso bikomeje, ni ngombwa cyane kujya kwa muganga no kumusuzuma neza.
Ni iyihe mpamvu yihariye itera LCH?
Mu magambo make, uturemangingo twacu dufite utunyangingo tubabwira ngo "twigabanye ubu, duhagarike ubu." Hafi kimwe cya kabiri cy'abana bafite LCH bagira impinduka nto, cyangwa impinduka, muri gene yabo yitwa 'BRAF .' Iyi gene ikora poroteyine igenzura imikurire y'utunyangingo. Kubera iyi mpinduka, iyo poroteyine ntibona itegeko ryo "guhagarika kwigabanya." Ni nk'aho "on" switch ihagaze. Bityo uturemangingo twa Langerhans dukomeza kwigabanya no kwihuza.
Ibi si ibintu ababyeyi bakura ku bana. Iyi mihindagurikire y’uturemangingo ibaho ku buryo butunguranye nyuma yuko umwana asamwe mu nda ya nyina.
Uretse gene ya `BRAF`, abashakashatsi bavumbuye ko iyi ndwara ishobora no guterwa n'impinduka mu zindi gene nka `MAP2K1`, `RAS`, na `ARAF`.
Ubibona ute, Muganga?
Iyo ujyanye umwana wawe kwa muganga, abanza kukubaza ibimenyetso by'umwana wawe. Hanyuma, bazasuzuma umwana wawe neza. Kubera ko LCH ishobora kugira ingaruka ku bice byinshi by'umubiri, hashobora gukenerwa ibizamini byinshi kugira ngo byemezwe ko ari indwara.
| Ubwoko bw'ikizamini | Mu magambo make ... |
|---|---|
| Ibipimo by'amaraso | Umubare wuzuye w'amaraso (CBC) upima umubare w'uturemangingo dutukura, uturemangingo twera, n'udupira tw'amaraso mu maraso. Ibizamini by'amaraso nabyo bikorwa kugira ngo harebwe imikorere y'umwijima. |
| Isuzuma ry'ibinyabuzima | Ubu ni bwo buryo buhamye bwo kwemeza LCH.Agace gato k'urugingo gafatwa mu kibyimba cyangwa mu gisebe hakoreshejwe ikinya, hanyuma kagasuzumwa hifashishijwe mikorosikopi kugira ngo hemezwe niba hari uturemangingo twa LCH. Iyo hari ukekwaho ko uturemangingo tw'amagufwa twagize uruhare, hashobora no gukorwa isuzuma ry'uturemangingo tw'amagufwa. |
| Gupima imiterere y'uturemangingo | Ingero y'uturemangingo twakuwe muri biopsy ikoreshwa mu gupima impinduka mu ngirabuzimafatizo ya `BRAF`. |
| Ibizamini byo Gushushanya | Ibizamini nka X-rays, CT scans, MRI scans, na PET scans bishobora kugaragaza ingano y'ingaruka za LCH ku ngingo z'imbere nk'amagufwa, ubwonko n'ibihaha. |
Hashingiwe ku bisubizo by'ibi bizamini, muganga wawe azohereza umwana wawe kwa muganga w'indwara z'amaraso/kanseri y'abana.
Ni ubuhe buryo bwo kuvura LCH?
Abana bose bafite LCH ntibakenera ubwoko bumwe bw'ubuvuzi. Uburyo bwo kuvura buterwa n'aho indwara iherereye n'uburemere bwayo.
Abaganga bashyira LCH mu byiciro bibiri by'ingenzi:
1. LCH y’uburyo bumwe: Iyi ndwara yibasira urugingo rumwe gusa mu mubiri (urugero: amagufwa gusa cyangwa uruhu gusa).
2. LCH yo mu buryo bwinshi: Iyi ndwara ifata ingingo ebyiri cyangwa nyinshi z'umubiri (urugero: uruhu n'umwijima).
Nanone, ingingo nk'umwijima, urwagashya, n'umusemburo w'amagufwa zifatwa nk'ingingo "zifite ibyago byinshi", mu gihe ingingo nk'uruhu, amagufwa, n'ibihaha zifatwa nk'"izifite ibyago bike." Iri tsinda rigena gahunda yo kuvura.
Hari uburyo bwinshi bw'ingenzi bwo kuvura:
- Uburyo bwo kuvura indwara ya steroid: Cyane cyane iyo uruhu ari rwo rwonyine rwagizeho ingaruka, imiti ya steroid nka prednisone ikoreshwa nk'ibinini cyangwa amavuta yo kwisiga.
- Kubaga: Kubaga nka curettage bikorwa kugira ngo haveho ikibyimba cya LCH mu igufwa.
- Chimiotherapie: Uyu ni ubwoko bw'umuti utangwa kugira ngo wice uturemangingo twa kanseri. Kubera ko uturemangingo twa LCH twigabanyamo kabiri vuba, iyi miti irabuza gukura. Iyi miti ishobora gutangwa nk'ibinini, inshinge, cyangwa nk'amavuta yo kwisiga ku ruhu.
- Ubuvuzi bushingiye ku mirasire: Bukoresha imirasire ifite ingufu nyinshi mu gusenya uturemangingo twa LCH. Ubu ibi bikoreshwa gake cyane.
- Ubuvuzi bwibasiwe:Ku bana bafite `BRAF` gene mutation, hari imiti (BRAF ibuza) yibasira iyo mutation. Iyi miti ntarengwa igira ingaruka mbi ku turemangingo tuzima.
- Ubudahangarwa bw'umubiri: Gukangura ubudahangarwa bw'umubiri bw'umwana kugira ngo burwanye uturemangingo twa LCH.
- Gutera uturemangingo tw’inyuma: Uburyo bwo kuvura bufatwa nk'uburyo bwo kuvura mu bihe bikomeye cyane kandi bidakunze kumera nk'ubundi buryo bwo kuvura.
Ese nyuma yo kuvurwa, ibintu byifashe bite?
Iteganyagihe ry’indwara ya LCH riterwa n’ibintu byinshi, birimo ibice by’umubiri iyi ndwara yafashe, aho yakwirakwiriye, n’uburyo yakira neza iyo ivuwe.
- Igipimo cy’uko abana bafite ingingo "zifite ibyago bike" byo kurwara (haba iz’umubiri umwe cyangwa iz’umubiri mwinshi) bakira hafi 100% . Ibi bivuze ko nta ngaruka zo gupfa zishobora kubaho. Ariko, hari ibyago byo kongera kurwara cyangwa izindi ngorane z’igihe kirekire.
- Indwara y'abana bafite ingingo zabo "zifite ibyago byinshi", nk'umwijima, urwagashya, n'umusemburo w'amagufwa, ishobora kuba ikomeye kurushaho.
Kubwibyo, ni ingenzi cyane gukurikirana muganga wawe imyaka myinshi, ndetse na nyuma yo kuvurwa. Ugomba gusuzumwa buri gihe niba uzongera kurwara.
Ubutumwa bwo kujyana mu rugo
- Indwara ya Langerhans Cell Histiocytosis (LCH) ni indwara idakunze kugaragara iterwa no gukura gukabije k'ubwoko bw'uturemangingo tw'umubiri. Ikunze kugaragara cyane mu bana.
- Nubwo iyi idashyirwa mu cyiciro cya kanseri, abaganga b'inzobere mu kuvura kanseri bayivura bakoresheje uburyo bwo kuyivura.
- Ibimenyetso (ibisebe by'uruhu, uduheri tw'amagufwa, indwara zikunze kwandura) biratandukanye cyane bitewe n'igice cy'umubiri cyafashwe n'iyi ndwara.
- Gupima indwara ni ingenzi kugira ngo hamenyekane neza indwara.
- Ku bana benshi, cyane cyane abari mu cyiciro cy' "abatishoboye cyane", ubuvuzi bushobora gukiza burundu indwara.
- Nubwo ubuvuzi burangiye, ni ngombwa cyane gukurikirana abaganga mu gihe cy'imyaka myinshi kugira ngo barebe niba indwara izongera kugaruka.
- Ganira na muganga wawe ku kibazo cyangwa impungenge ufite ku buzima bw'umwana wawe.
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