Mwana wako awana bundu diki here pane imwe nzvimbo pamuviri wake? Kana kuti mapundu paganda kana mapundu anokwenya asingapore? Dzimwe nguva izvi zvakajairika, asi kashoma kuti zvive zviratidzo zvechirwere chisingawanzoitiki chinonzi Langerhans Cell Histiocytosis (LCH). Zvakajairika kuti unzwe kutya paunonzwa zita iri, nekuti harisi chinhu chatakajaira kunzwa. Asi usazvidya mwoyo, ngatitaure nezvazvo nemashoko akareruka.
Zvichitaurwa zviri nyore, chii chinonzi LCH?
Funga nezvemuviri wedu senyika hombe. Kune uto rekudzivirira nyika ino, uye ndiro immune system yedu. Rudzi rwakakosha rwemurwi muuto iri runonzi masero eLangerhans . Masero aya rudzi rwemasero machena eropa. Basa rawo guru nderekurwisa utachiona nehutachiona hunopinda mumuviri wedu uye huchitidzivirira kubva kuzvirwere. Masoja aya anowanikwa mumuviri wedu wese, kunyanya muganda, mapapu, lymph nodes, bone moory, spleen, nechiropa.
Asi kana iri LCH, masero aya eLangerhans anowanda zvisingadzoreki uye anoungana munzvimbo dzakasiyana dzemuviri. Zvakafanana neboka remasoja akangomira panzvimbo imwe chete asina kurwa. Paanoungana seizvi, anotanga kukuvadza nyama dzakagwinya dziri munzvimbo idzodzo. Maronda anovapo munzvimbo idzodzo.
Mashoko akanaka nezvechirwere ichi ndeekuti vana vazhinji vanogona kupora zvachose kubva muchirwere ichi nekurapwa kwakakodzera. Dzimwe nguva, kunyanya kana chikangokanganisa ganda chete, chinogona kupera chega pasina kurapwa. Zvisinei, kana masero aya akakanganisa nhengo dzinokosha dzakadai semupfupa, chiropa kana chiropa, kurapwa kwakasimba kunogona kudiwa.
Kenza yeLCH here?
Uyu mubvunzo une vanhu vazhinji. Kutaura zvazviri, kuchine kusawirirana pakati pevanachiremba pamusoro peizvi. Vaongorori vazhinji vanoona LCH sechirwere chakafanana nekenza, kureva bundu . Kureva, kukura kusingawanzoitiki kwemasero. Asi vamwe vanofunga kuti chirwere chekuzvimba kwemuviri wemuviri.
Zvisinei, LCH inorapwa nevanachiremba vekenza, avo vanonyanya kubata kenza nezvirwere zveropa. Dzimwe nguva, mishonga yekurapa kenza yakadai sechemotherapy inoshandiswawo kurapa chirwere ichi.
Ndiani ane mukana mukuru wekuwana chirwere ichi?
LCH inowanzoonekwa muvacheche nevana vari pakati pemakore 1 ne15. Vakuru havawanzoonekwi, asi hazvigoneki.
Zvichienderana nehuwandu hwevanhu, mwana mumwe chete kana vaviri pavana vacheche vanozvarwa vaine chirwere ichi gore rega rega. Izvi zvinoreva kuti chirwere ichi hachiwanzoitiki .
Ndezvipi zviratidzo zveLCH?
LCH haibate mwana wese nenzira imwe chete. Kunyange hazvo vamwe vana vangangove nenzvimbo imwe chete yemuviri wavo yakakanganiswa, vamwe vangangove nenzvimbo dzakawanda dzemuviri wavo dzakakanganiswa. Saka, zviratidzo zvinosiyana zvichienderana nechikamu chemuviri chakakanganiswa. Ngationei kuti chii.
| Nhengo yemuviri yakakanganiswa | Zviratidzo zvinogona kuonekwa |
|---|---|
| Mapfupa | LCH inokanganisa mapfupa muvanhu vanosvika 80%. Bundu kana kuzvimba zvinogona kuonekwa munzvimbo dzakadai sedehenya, mapfupa akakomberedza maziso, kuseri kwenzeve, shaya, makumbo, musana, uye chiuno. Marwadzo anogona kunge aripo kana kuti asipo. Pamusoro pezvo, musoro, kurwadziwa kwemutsipa/musana, kuoma kufamba, uye kuremadza zvinogona kuonekwa. |
| Ganda | Mapundu anonyanya kuoneka ganda. Chivharo chemwana chinogona kunge chiri chirwere chisingapori chinoonekwa mumusoro memwana. Mapundu matsvuku, ane mavanga anogona kuonekwa pahudyu, muhapwa, mudumbu, pachipfuva, nemusana. Izvi zvinogona kubuda ropa uye kuvaviwa kana kurwadziwa. Nzara dzinogonawo kuchinja ruvara kana kudonha. |
| Muromo | Mazino asina kusimba kana kuti asina kusimba, mazino ari kudzika, mazino akazvimba, maronda pamiromo, parurimi, mukati mematama, kana pamusoro pemuromo. |
| Chiropa kana chipembenene | Chiropa chakakura kana chirwatata chinogona kukonzera kuzvimba mudumbu, kuita yero mumaziso neganda (jaundice), kuvaviwa, kuneta zvakanyanya, uye kutsvuka kana kubuda ropa zviri nyore. |
| Bone Morrow | Kushaya ropa, kucheneruka, kuneta, uye kushaya chido chekudya nekuda kwekudzikira kwemasero matsvuku eropa. Kutapukirwa nezvirwere kakawanda uye fivha nekuda kwekudzikira kwemasero machena eropa. Kukuvara kuri nyore nekuda kwekudzikira kwemaplatelet. |
| Sisitimu yeEndocrine (Sisitimu yeEndocrine - Mahormone) | Kana gland repituitary rikabatwa: nyota yakawandisa uye kuita weti kakawanda (diabetes insipidus), kukura zvishoma nezvishoma, kutanga kwekuyaruka kana kunonoka, kuwedzera uremu. Kana gland rethyroid rikabatwa: kuzvimba kwegland, kuoma kufema. |
| Nzeve | Kurwara nenzeve kakawanda, kubuda ropa munzeve, kutsvuka kwenzeve, kuvaviwa munzeve, kurwadziwa munzeve, uye kurasikirwa nekunzwa. |
| Maziso | Maziso akatumbuka, kuzvimba pamusoro pemaziso, kutadza kuona zvakanaka. |
| MaNode eLymph | Kuzvimba uye kurwadziwa mumapundu (mapundu) mumutsipa, muhapwa, kana muzvidya. |
| Sisitimu Yepakati Yetsinga | Musoro, dzungu, kurutsa, kuoma kufamba, kurasikirwa nepfungwa dzakanaka (ataxia), kuoma kutaura kana kuona, pfari, kuchinja maitiro nendangariro. |
| Mapapu | Izvi zvinowanzoitika kuvanhu vakuru, kunyanya vanoputa fodya. Marwadzo echipfuva, kukosora kwakaoma, kufema zvakaoma, mapapu akadonha (pneumothorax). |
| Nzira yeMatumbu | Kurwadziwa kwemudumbu, kurutsa, manyoka, ropa mutsvina, uye kusakura zvakanaka nekuda kwekushaya chikafu. |
Chinhu chakakosha ndechekuti zviratidzo izvi zvinogona kuonekwawo mune zvimwe zvirwere zvakawanda zvakajairika. Saka usatya LCH nekuti une chimwe kana zviviri zvezviratidzo izvi. Asi kana zviratidzo izvi zvikaramba zviripo, zvakakosha kuona chiremba woongororwa zvakanaka.
Chii chinonyanya kukonzera LCH?
Zvichitaurwa zviri nyore, masero edu ane majini anoaudza kuti "patsanura izvozvi, mira izvozvi." Inenge hafu yevana vane LCH vane shanduko diki, kana kuti mutation, mujini ravo rinonzi `BRAF .' Jini iri rinogadzira puroteni inodzora kukura kwemasero. Nekuda kwemutation iyi, puroteni iyoyo haiwani murairo wekuti "mira kupatsanura." Zvakaita sekuti 'on' switch yanamira. Saka masero eLangerhans anoramba achipatsanurana uye achibatana.
Izvi hazvisi zvinhu zvinogara nhaka kubva kuvabereki kuenda kuvana. Kuchinja kwemajini uku kunoitika zvisina tsarukano mushure mekunge mwana abatwa mudumbu raamai vake.
Pamusoro pegene re'BRAF', vaongorori vakaona kuti chirwere ichi chinogonawo kukonzerwa nekuchinja kwemajini mune mamwe majini akadai se'MAP2K1`, 'RAS`, uye 'ARAF`.
Unoona sei izvi, Chiremba?
Paunoendesa mwana wako kuna chiremba, iye achatanga nekukubvunza nezvezviratidzo zvemwana wako. Zvadaro, vachanyatsoongorora mwana wako. Nekuti LCH inogona kukanganisa nhengo dzakasiyana dzemuviri, bvunzo dzinoverengeka dzingadiwa kuti usimbise chirwere chacho.
| Rudzi rwekuyedza | Zvichitaurwa zviri nyore... |
|---|---|
| Kuongororwa kweRopa | Kuverengwa kweropa kwakazara (CBC) kunoyera huwandu hwemasero matsvuku, masero machena, uye maplatelet muropa. Kuongororwa kweropa kunoitwawo kuti vaone zvinhu zvakaita sekushanda kwechiropa. |
| Kuongororwa kwemuviri | Iyi ndiyo nzira inonyanya kujeka yekusimbisa LCH.Kanyama kadiki kanotorwa kubva pabundu kana chironda pasi peanesthesia koongororwa nemaikorosikopu kuti zvionekwe kana masero eLCH aripo. Kana paine fungidziro yekuti mapfupa emubofu akabatanidzwa, kuongororwa kwemapfupa emubofu kunogona kuitwawo. |
| Kuedzwa kwemajini | Sampuro yenyama inotorwa kubva mu biopsy inoshandiswa kuyedza shanduko mujini re 'BRAF'. |
| Miedzo yeKufungidzira | Miedzo yakaita seX-rays, CT scans, MRI scans, uye PET scans inogona kuona kuti LCH inoshanda sei panhengo dzemukati dzakadai semapfupa, uropi, nemapapu. |
Zvichibva pamhedzisiro yebvunzo idzi, chiremba wako achatumira mwana wako kuna chiremba weropa/oncologist wevana.
Ndezvipi zvirongwa zvekurapa LCH?
Havasi vana vese vane LCH vanoda kurapwa kwakafanana. Kurapwa kunoenderana nenzvimbo uye kuoma kwechirwere.
Vanachiremba vanoisa LCH muzvikamu zviviri zvikuru:
1. LCH yemumuviri mumwe chete: Chirwere ichi chinongobata nhengo imwe chete mumuviri (semuenzaniso, mapfupa chete kana ganda chete).
2. Multi-system LCH: Chirwere ichi chinokanganisa nhengo mbiri dzemuviri (semuenzaniso, ganda nechiropa).
Uyewo, nhengo dzakadai sechiropa, chirebvu, nemwongo wemapfupa dzinoonekwa senhengo "dzine njodzi huru", nepo nhengo dzakadai seganda, mapfupa, nemapapu dzichionekwa se "dzine njodzi shoma." Kurongwa uku kunosarudza hurongwa hwekurapa.
Kune nzira dzinoverengeka huru dzekurapa:
- Kurapa neSteroid: Kunyanya kana ganda chete riri kukanganiswa, mishonga yeSteroid yakaita sePrednisone inoshandiswa semapiritsi kana mafuta ekuzora.
- Kuvhiyiwa: Kuvhiyiwa kwakadai sekuvhiyiwa kwemushonga wekubvisa bundu reLCH mupfupa.
- Kurapa nemakemikari: Uyu mushonga unopihwa kuuraya masero egomarara. Nekuti masero eLCH anopatsanuka nekukurumidza, mishonga iyi inoamisa kukura. Mishonga iyi inogona kupihwa semapiritsi, jekiseni, kana sekirimu inoiswa paganda.
- Kurapa nemwaranzi: Kunoshandisa mwaranzi ine simba guru kuparadza masero eLCH. Izvi hazvichashandiswi zvakanyanya.
- Kurapa kwakanangana:Kune vana vane `BRAF` gene mutation, kune mishonga (BRAF inhibitors) inotarisa kushanduka uku. Iyi haina kukuvara kukuru kumasero ane hutano.
- Kurapa Nezvirwere: Kukurudzira masoja emuviri emwana kuti arwise masero eLCH.
- Kuisirwa masero emuviri: Nzira yekurapa inoonekwa muzviitiko zvakakomba zvisingarapike nedzimwe nzira dzekurapa.
Mamiriro ezvinhu akaita sei mushure mekurapwa?
Kufanotaura kwechirwere cheLCH kunoenderana nezvinhu zvakati wandei, zvinosanganisira kuti chirwere ichi chakakanganisa nhengo dzipi dzemuviri, kuti chapararira kusvika papi, uye kuti chinopindura sei kurapwa.
- Mwero wekurapwa kwevana vane nhengo dzisina njodzi yakakura (mune imwe chete uye muine akawanda) wakaderera ne100% . Izvi zvinoreva kuti hapana njodzi yekufa. Zvisinei, pane njodzi yekudzokazve kana mamwe matambudziko kwenguva refu.
- Mamiriro evana vane nhengo dzine "njodzi huru", dzakadai sechiropa, chirebvu, uye muro wemapfupa, angave akakomba zvikuru.
Saka, zvakakosha zvikuru kuti urambe uchiongorora chiremba wako kwemakore akawanda, kunyangwe mushure mekunge kurapwa kwapera. Unofanira kugara uchiongororwa kuti chirwere chako chinodzoka here kana kuti kwete.
Mharidzo Yekuenda Nayo Kumba
- Langerhans Cell Histiocytosis (LCH) chirwere chisingawanzoitiki chinokonzerwa nekukura kusingadzoreki kwerudzi rwemasero ekudzivirira muviri. Chinonyanya kuonekwa muvana.
- Kunyangwe izvi zvisingaonekwe sekenza, vanachiremba vekenza vanorapa vachishandisa mishonga yekurwisa kenza.
- Zviratidzo (maronda eganda, mapundu emapfupa, hutachiona hunowanzoitika) zvinosiyana zvikuru zvichienderana nechikamu chemuviri chakanganiswa nechirwere.
- Kuongororwa kweropa (biopsy) kwakakosha kuti chirwere chiongororwe zvakanaka.
- Kune vana vazhinji, kunyanya avo vari muchikamu che "vane njodzi shoma", kurapwa kunogona kurapa chirwere chose.
- Kunyangwe mushure mekunge kurapwa kwapera, zvakakosha kuti urambe uchiongororwa nachiremba kwemakore akati wandei kuti uone kana chirwere chacho chichidzoka zvakare.
- Kurukurai mibvunzo kana zvinokunetsai nezvemamiriro emwana wenyu pachena nachiremba wenyu.
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