Mwana wenyu ane bundu remuuropi risingawanzoitiki rakadai here? Ngatikurukurei nezve AT/RT (Atypical Teratoid/Rhabdoid Tumor)

Semubereki, imwe yenhau dzakaoma uye dzinorwadza zvikuru dzaunganzwa ndeyekuziva kuti mwana wako ane kenza. Zvakajairika kunzwa kutya, kunetseka, uye kusuruvara paunonzwa nezvekenza isingawanzoitiki, yakakomba seAT/RT (atypical teratoid/rhabdoid bundu). Asi zvakakosha kuyeuka kuti hausi wega murwendo urwu rwakaoma. Chikwata chevanachiremba vemwana wako chiri newe nhanho imwe neimwe yerwendo.

Chii chinonzi AT/RT (Atypical Teratoid/Rhabdoid Tumor)?

Zvichitaurwa zviri nyore, AT/RT rudzi rwegomarara rinokura nekukurumidza uye rinotanga muhurongwa hwetsinga dzeropa (CNS). Hurongwa hwedu hwetsinga dzeropa hunoumbwa neuropi nemusana. Masero aya egomarara anotangira muuropi kana mumutsipa. Munenge hafu yevanhu vane AT/RT, inotangira mucerebellum kana muuropi. Chirwere ichi chinonyanya kubata vana vadiki.

Zviratidzo zvinogona kuoneka kamwe kamwe. Pakutanga, ungafunga kuti mwana wako ane chirwere chidiki, senge dzihwa. Asi zviratidzo izvi hazviperi nekufamba kwenguva kana nekurapwa nguva dzose. Ndipo panosvika chiremba anoraira bvunzo kuti aone kuti chii chiri kunyanya kunetsa mwana wako. Kana AT/RT yaonekwa, chiremba wako achataura newe nezvenzira dzakanakisisa dzekurapa chirwere chemwana wako.

Kutaura chokwadi, mhedzisiro yerudzi urwu rwegomarara kazhinji haisi yakanaka. Nekuti inopararira nekukurumidza, uye dzimwe nguva zvinonetsa kuibvisa zvachose. Nokudaro, hupenyu hwemwana hunogona kupfupikiswa. Zvisinei, havasi vese vane mhedzisiro yakaipa. Vaongorori vanogara vachiedza kutsvaga mishonga mitsva yekuwedzera mikana yekuponesa vana.

Zvakajairika kunzwa mibvunzo yakawanda uye kusava nechokwadi kana waonekwa kuti une kenza, kunyanya kenza isingawanzoitiki yakaita seAT/RT. Asi yeuka, timu yevanachiremba vemwana wako inewe murwendo urwu. Kune rutsigiro rwakawanda kumhuri nevanotarisira.

Ko AT/RT inonzi kenza yerudzii?

AT/RT imhando isingawanzoitiki yegomarara reuropi rinokanganisa sisitimu yetsinga (CNS), kureva uropi nemuzongoza.

Izvi hazviwanzoitiki sei?

Ongororo yakaitwa muUnited States yakawana kuti vanhu 470 chete ndivo vanorarama neAT/RT. Izvi zvinoreva kuti vanhu vanosvika 73 chete ndivo vanoonekwa vaine chirwere ichi gore rega rega. Zvinoshamisa kuti pavanhu 73 ivavo, vana chete ndivo vakuru. Saka unogona kufungidzira kuti chinokanganisa vana vadiki zvakanyanya sei, uye kuti hachiwanzoitiki.

Ndezvipi zviratidzo zveAT/RT?

Zviratidzo zveAT/RT zvinogona kusiyana kubva pamunhu kuenda kumunhu. Zvinoenderana nezvinhu zvakaita sezera remwana uye nzvimbo yebundu. Zvisinei, zviratidzo izvi zvinogona kuoneka kamwe kamwe uye zvinokurumidza kukura:

• Musoro:Izvi zvinowanzoitika mangwanani. Dzimwe nguva zvinopera mushure mekurutsa.
• Kusvotwa nekurutsa: Kusvotwa nekurutsa nguva nenguva.
• Kuneta: Mwana anonzwa kuneta nguva dzese.
• Kuchinja kwedanho rekuita: Kusamhanya nekutamba sezvaimboita, kunzwa kuneta.
• Kuomerwa nekufamba, kuchengetedza kuenzana, uye kubatana: Zvinoita sekunge uri kukanganiswa pakufamba, uye zvakaoma kubata zvinhu.

Fungidzira, kwemazuva mashoma ikozvino, mwana wako mudiki ave achimuka mangwanani achiti, "Amai, musoro wangu unorwadza," kana kurutsa. Ane usimbe hwekuita basa rechikoro, uye anoita seane hope nguva dzese. Kana mwana wako, aimbomhanya-mhanya nekutamba, iye zvino achiedza kugara panzvimbo imwe chete, izvozvo zvinogonawo kuva chiratidzo chechinhu chakadai.

Muvana vadiki, bundu iri rinogona kuita kuti musoro uratidzike sewakakura zvishoma. Zvisinei, muvana vakuru, zvingasava pachena.

Chii chinokonzera AT/RT?

Chikonzero chikuru cheAT/RT kuchinja kwemajini maviri, angave SMARCB1 kana SMARCA4. Aya anonzi "majini anodzvinyirira tumor." Zvichitaurwa zviri nyore, majini aya anoita puroteni inodzora kumhanya nehukuru hwemasero mumuviri wedu. Saka, kana paine shanduko kana chikanganiso mumajini aya, masero anotanga kukura nekukurumidza uye zvisingadzoreki. Ndicho chikonzero nei mabundu aya achiumbwa.

Izvi zvine chekuita nemajini here?

Ehe, dzimwe nyaya dzeAT/RT dzinogona kunge dziri dzemajini. Izvi zvinoreva kuti germline mutation inokonzera gomarara iri inogona kugarwa nhaka kubva kuvabereki kuenda kumwana. Zvisinei, kazhinji, haisi nhaka. Izvi zvinoreva kuti germ mutation inogona kuitika nguva nenguva mumwana, kunyangwe pasina munhu mumhuri akambova nechirwere ichi.

Ndiani ari panjodzi huru?

AT/RT inowanzobata vana vari pasi pemakore matatu. Zvisinei, zvakakosha kuyeuka kuti inogona kukura muvana vezera ripi zvaro, kana muvakuru.

AT/RT inoonekwa sei?

Chiremba anoongorora AT/RT nekuita bvunzo yemuviri, bvunzo yetsinga, uye mimwe miedzo mishomanana yakasarudzika. Munguva yekuongororwa kwekutanga uku, chiremba achakubvunza nezvezviratidzo zvemwana wako, nhoroondo yezvekurapa, uye kana paine mumwe munhu mumhuri yako akambova nechirwere ichi.

Pamusoro pezvo, bvunzo dzakaitwa ndeidzi:

• MRI (Magnetic Resonance Imaging) scan: Izvi zvinogona kutora mifananidzo yakadzama yeuropi nemusana. Izvi zvinogona kubatsira kuona nzvimbo chaiyo uye saizi yebundu.
• Kuboorwa kwemusana: Izvi zvinosanganisira kutora sampuli diki yemvura yakatenderedza musana (cerebrospinal fluid) woiedza kuti uone kana masero ekenza apararira.
• Kuongororwa kwemajini:Kuongororwa uku kunoitwa kuti kuonekwe kana paine shanduko mumajini eSMARCB1 kana SMARCA4 ambotaurwa.
• Kuongororwa kwemuviri: Izvi zvinosanganisira kutora chidimbu chidiki chebundu wochiongorora uchishandisa maikorosikopu kuti uone rudzi rwegomarara.

Ndezvipi zvirongwa zvekurapa AT/RT?

Chiremba wemwana wenyu anogona kukukurudzirai zvinotevera senzira yekurapa AT/RT:

Kuvhiyiwa kubvisa bundu

Chiremba wepfungwa anobvisa bundu iri zvakanyanya sezvinobvira nekuvhiyiwa. Zvisinei, mishonga yekurapa nemwaranzi inogonawo kudiwa kuti iparadze masero egomarara asara mushure mekuvhiyiwa.

Kurapwa nemakemikari

Uyu mushonga unouraya masero egomarara kana kuamisa kupatsanuka. Dzimwe nguva mushonga uyu unopihwa nemuromo kana sejekiseni mutsinga kana tsandanyama (systemic chemotherapy). Imwe nzira ndeyekuisa mushonga zvakananga mumvura yakatenderedza musana (intrathecal chemotherapy).

Kurapa Nemwaranzi

Izvi zvinoshandisa X-rays ine simba guru kuuraya masero ekenza kana kuamisa kukura. Muchina unotungamira mwaranzi iyi kuenda kugomarara chairo. Vana vari pasi pemakore matatu vanopihwa kurapwa nemwaranzi nedosi shoma nekuti zvinogona kukanganisa kukura kwavo.

Kudyarwa kweSero reStem

Mushure mekupiwa mishonga yekurapa ine mushonga wakanyanya, mwana anoisirwa stem cell kuti atsive masero anenge arasikirwa nemuviri wake. Chemotherapy isati yatanga, vanachiremba vanotora mamwe masero ekurapa kubva kumwana voachengeta. Zvadaro, kana chemotherapy yapera, masero acho anodzoserwa mumwana kuburikidza netsinga (mutsinga).

Kurapa Kwakanangwa

Uyu mushonga mutsva weAT/RT uri mukuyedzwa kwekiriniki parizvino. Mune izvi, mimwe mishonga inoshanda nekuvharira zvimwe zvinhu zvinobatsira masero ekenza kukura nekupatsanurana.

Kurapa nekudzivirira muviri

Uyu mushonga uri kushandiswawo pari zvino mukuyedzwa kwekiriniki kweAT/RT. Unoshanda nekubatsira masoja emuviri emwana kurwisa kenza.

Kutarisirwa Kwevanhu Vasina Kunzwa Kurwadziwa

Izvi zvinoitirwa kuderedza zviratidzo zvemwana, kuderedza marwadzo, kupa zororo, uye kuvandudza hupenyu hwake.

Zvakakosha: Chiremba achaita bvunzo idzi dzese uye anosarudza kuti ndeipi mishonga yakanakira mwana wako. Dzimwe nguva mishonga inopfuura imwe chete inogona kupihwa. Zvakakosha kuramba uchitarisirwa nachiremba uye kuongororwa mushure mekurapwa. Iyi ndiyo nzira yaunogona kuona kana kurapwa kwacho kwabudirira uye kana kenza yadzoka.

Ndiani ari muchikwata chevanachiremba chemwana wako?

Unogona kuona vanachiremba vakasiyana-siyana nevanoona nezveutano paunenge uchirapa AT/RT. Chikwata chevanachiremba chemwana wako chinogona kusanganisira:

• Vanachiremba vevana kana vanachiremba vemhuri (Vanachiremba vekutanga)
• Vanachiremba vepfungwa
• Vanachiremba vekenza yemwaranzi
• Vanachiremba vetsinga
• Vanopa mazano ezvemajini

Pane migumisiro yakaipa here yekurapwa kwacho?

Ehe, migumisiro inogona kuitika pakurapwa kwese kweAT/RT. Chiremba wemwana wako achakutsanangurira kuti migumisiro iyi chii uye zvekuchenjerera panguva yekurapwa. Mimwe migumisiro inogona kuitika ipapo ipapo, nepo mimwe isingaoneke kusvika mwedzi yakati wandei yapera. Kana uine mibvunzo, usazeza kubvunza chiremba wako.

Chii chinonzi AT/RT? (or) Chii chinonzi AT/RT?

AT/RT rudzi rwegomarara rinokurumidza kupararira, uye kana kurapwa kukasapera zvachose, hupenyu hwemwana hunogona kupera nekukurumidza. Zvisinei, izvi zvinosiyana zvikuru kubva pamunhu kusvika pamunhu. Semuenzaniso, kana bundu rikagona kubviswa zvachose nekuvhiyiwa, pane mukana wekurapwa.

Maonero acho anokonzerwa nezvinhu zvakasiyana-siyana:

• Zera remwana wako.
• Kugara nhaka yemajini.
• Bundu iri rinogona kubviswa zvakachengeteka sei kuburikidza nekuvhiyiwa?
• Kana kenza yapararira kune dzimwe nhengo dzemuviri.

Chiremba wako chete ndiye anogona kukupa ruzivo rwakanyatsojeka nezve fungidziro yemwana wako. Kana uine mibvunzo, taura nechikwata chevanachiremba vemwana wako.

Chii chinonzi AT/RT inorarama uye inorapwa?

Nekuti AT/RT rudzi rwegomarara rusingawanzoitiki, hapana ruzivo rwakakwana rwekufanotaura nemazvo mwero wekurarama uye kurapwa kwechirwere ichi. Chiremba wemwana wako achakwanisa kukupa ruzivo rwechizvino-zvino maererano nechirwere chemwana wako.

Ko AT/RT inogona kudzivirirwa here?

Zvinosuwisa kuti parizvino hapana nzira yekudzivirira AT/RT. Kana uchitarisira kuva nemumwe mwana, zvingava zvakanaka kutaura nenyanzvi yezvemajini kuti muzive kana iwe kana mumwe wako muine genetic mutation inogona kukonzera AT/RT uye kuti njodzi iripo yekuti mwana wenyu aigare nhaka.

Mibvunzo ipi yaunofanira kubvunza chiremba wemwana wako?

Zvakajairika kuva nemibvunzo yakawanda mupfungwa dzako mushure mekudzidza nezve AT/RT. Iva nechokwadi chekubvunza chiremba wemwana wako mibvunzo iyi:

• Bundu riri pamuviri wemwana wangu riri kupi?
• Munokurudzira rudzii rwekurapwa?
• Pane migumisiro yakaipa here yekurapwa kwacho?
• Kurapwa uku kuchakanganisa kukura nekukura kwemwana wangu here?
• Chii chinonzi fungidziro yemwana wangu?

Chekupedzisira, chinhu chinonyanya kukosha (Mharidzo Yekuenda Kumba)

"Mwana wako ane kenza." Aya ndiwo mamwe emashoko akaomarara ayo mubereki anogona kunzwa. Ungave uchinetseka nezvezvichaitika zvinotevera, nezveramangwana remwana wako. Kunyange zvazvo paine kusaziva kwakawanda kunouya nekenza, yeuka kuti timu yevanachiremba vemwana wako inewe nhanho imwe neimwe yenzira. Vachakubatsira kufamba mukurapwa, kugadzirisa zviratidzo, uye kutarisira mwana wako muhupenyu hwake hwese. Tsvagiridzo iri kuenderera mberi nekudzidza zvakawanda nezve AT/RT (atypical teratoid/rhabdoid tumor) uye kutsvaga nzira itsva dzekuirapa. Saka, usamborega tariro.

AT /RT, kenza yeuropi, kenza yevana, zviratidzo zvekenza, kurapwa kwekenza, kushanduka kwemajini, tsinga dzetsinga