Ðe ahɔhɔ̃ me dɔdzẽ si mebɔ o abe esia ene le viwòa ŋua? Mina míaƒo nu tso AT/RT (Atypical Teratoid/Rhabdoid Tumor) ŋu .

Abe dzila ene la, nya sesẽ kple dzigbãnya siwo nàte ŋu ase dometɔ ɖekae nye be nàse be kansa le viwòa ŋu. Esɔ be nàvɔ̃, atsi dzimaɖi, eye nàlé blanui gɔ̃ hã ne èse kansa si mebɔ o, si nu sẽ abe AT/RT (atypical teratoid/rhabdoid tumor) ene ŋu nya. Gake ele vevie be nàɖo ŋku edzi be menye wò ɖeka koe le mɔzɔzɔ sesẽ sia me o. Viwòa ƒe atikewɔlawo ƒe ƒuƒoƒoa le kpli wò le mɔa ƒe afɔɖeɖe ɖesiaɖe me.

Nukae nye AT/RT (Atypical Teratoid/Rhabdoid Tumor)?

Kpuie ko la, AT/RT nye kansa ƒomevi aɖe si tsina kabakaba ŋutɔ eye wòdzea egɔme tso lãmekawo ƒe dɔwɔwɔ (CNS) me. Ahɔhɔ̃ kple aklãe nye míaƒe lãmeka siwo le titina. Kansa lãmenugbagbevi siawo dzea egɔme tso ahɔhɔ̃ alo aklã me. Le amesiwo ŋu AT/RT le ƒe afã lɔƒo gome la, edzea egɔme tso ahɔhɔ̃meka alo ahɔhɔ̃mekawo me. Ðevi suewo koŋue nɔnɔme sia gblẽa nu le.

Dzesiawo ate ŋu adze kpata. Gbã la, àsusu be dɔléle sue aɖe le viwòa ŋu, abe dzamezã ene. Gake dzesi siawo nu yina ne ɣeyiɣiawo va le yiyim alo ne wowɔ atike na wo edziedzi o. Ɣemaɣie ɖɔkta aɖe gbe be woawɔ dodokpɔwo atsɔ anya nusi tututu gblẽ le viwòa ŋu. Ne wonya kpɔ AT/RT ko la, wò ɖɔkta aƒo nu tso atikewɔwɔ nyuitɔ kekeake siwo nàte ŋu azã na viwòa ƒe nɔnɔmea ŋu na wò.

Ne míagblɔe tututu la, zi geɖe la, kansa sia ƒomevi me tsonu menyona tututu o. Elabena ekakana kabakaba ŋutɔ, eye ɣeaɖewoɣi la, esesẽna be woaɖee ɖa keŋkeŋ. Eya ta woate ŋu aɖe ɖevia ƒe agbenɔƒe dzi akpɔtɔ. Ke hã, menye amesiamee nu gbegblẽ tsona o. Numekulawo le agbagba dzem ɣesiaɣi be yewoadi atike yeye siwo ana mɔnukpɔkpɔ si li be woaɖe ɖeviwo nadzi ɖe edzi.

Enye nusi sɔ be nàse nyabiase geɖe kple kakaɖedzimanɔamesi ne wokpɔ kansa le ŋuwò, vevietɔ kansa si mebɔ o abe AT/RT ene. Gake ɖo ŋku edzi be viwòa ƒe atikewɔlawo ƒe ƒuƒoƒoa le gbɔwò le mɔzɔzɔ sia katã me. Kpekpeɖeŋu geɖe li na ƒometɔwo kple dɔnɔdzikpɔlawo.

Kansa ƒomevi ka ƒomevie nye AT/RT?

AT/RT nye ahɔhɔ̃mekansa ƒomevi aɖe si mebɔ kura o si gblẽa nu le lãmeka siwo le titina (CNS), si nye ahɔhɔ̃ kple aklã ŋu.

Aleke gbegbee esia mebɔ o?

Numekuku aɖe si wowɔ le United States ɖee fia be ame 470 koe nɔa AT/RT ŋu. Ema fia be ame abe 73 ene koe wokpɔa dɔlélea le ƒe sia ƒe. Nukutɔe la, le ame 73 mawo dome la, ame 4 koe nye ame tsitsiwo. Eyata àte ŋu akpɔ alesi gbegbe wògblẽa nu le ɖevi suewo ŋui, kple alesi gbegbe wòbɔe la le susu me.

Nukae nye AT/RT ƒe dzesiwo?

AT/RT ƒe dzesiwo ate ŋu ato vovo tso ame ɖeka gbɔ yi bubu gbɔ. Wonɔa te ɖe nusiwo le abe ƒe si ɖevia xɔ kple afisi dɔdzẽa le dzi. Gake dzesi siawo ate ŋu adze kpata eye woasẽ kabakaba:

• Taɖuame:Esia bɔ vevietɔ le ŋdi me. Ɣeaɖewoɣi la, eɖea dzi ɖi le aɖuɖɔɖɔɖɔ vɔ megbe.
• Aɖuɖɔtoe kple ʋuʋudedi: Aɖuɖɔtoe kple ʋuʋudedi enuenu.
• Ðeɖiteameŋu: Ðevia senɛ le eɖokui me be ɖeɖi te eŋu ɣesiaɣi.
• Tɔtrɔ siwo va le dɔwɔna ƒe seƒe: Menye duƒuƒu kple fefe abe tsã ene o, sese le eɖokui me be kuviawɔwɔ le ye ŋu.
• Azɔlizɔzɔ sesẽ, dadasɔ, kple nuwɔwɔ ɖekae: Ewɔna nam abe ɖe mèda sɔ o ne èle zɔzɔm ene, eye esesẽna be nàlé nuwo.

Bu eŋu kpɔ, ŋkeke ʋee aɖewoe nye esia, viwò sue la nyɔna le ŋdi me hele gbɔgblɔm be, "Dada, nye ta le veve sem," alo le ʋuʋum. Kuviatɔ akpa be wòate ŋu awɔ sukudɔdasiwo, eye edze abe alɔ̃ dɔmnɛ ɣesiaɣi ene. Ne viwò si ƒua du nɔa fefem tsã la dze agbagba fifia be yeanɔ teƒe ɖeka la, ema hã ate ŋu anye nane si le abe esia ene ƒe dzesi.

Le vidzĩ suewo gome la, dɔdzẽ sia ate ŋu ana ta nadze abe ɖe wòlolo vie ene. Gake le ɖevi tsitsiwo gome la, ɖewohĩ madze ƒã nenema o.

Nukae hea AT/RT vɛ?

Nu vevitɔ si gbɔ AT/RT tsonae nye domenyiŋusẽfianu eve dometɔ ɖeka ƒe tɔtrɔ, si nye SMARCB1 alo SMARCA4. Woyɔa esiawo be "dɔdzẽ ƒe domenyiŋusẽfianu siwo tea dɔdzẽ nu." Kpuie ko la, domenyiŋusẽfianu siawo wɔa protein si kpɔa lãmenugbagbeviwo ƒe duƒuƒu kple woƒe lolome dzi le míaƒe ŋutilã me. Eyata ne tɔtrɔ alo nu gblẽ le domenyiŋusẽfianu siawo ŋu la, lãmenugbagbeviawo dzea tsitsi gɔme kabakaba eye womate ŋu aɖu wo dzi o. Ema tae dɔdzẽ siawo dzɔna ɖo.

Domenyiŋusẽfianue esia nyea?

Ẽ, AT/RT ƒe dɔléle aɖewo ate ŋu atso domenyiŋusẽfianu gbɔ. Esia fia be woate ŋu anyi dɔlékui ƒe tɔtrɔ si hea kansa sia vɛ la ƒe dome tso dzilawo gbɔ na ɖevia. Gake zi geɖe la, menye domenyiŋusẽfianue wònye o. Esia fia be domenyiŋusẽfianu ƒe tɔtrɔ ate ŋu adzɔ ɣeaɖewoɣi le ɖevi ŋu, ne dɔlélea medze ƒomea me kpɔ o gɔ̃ hã.

Amekae le afɔku me wu?

AT/RT dzea ɖevi siwo mexɔ ƒe 3 haɖe o dzi zi geɖe.Ke hã, ele vevie be míaɖo ŋku edzi be ate ŋu adze ɖevi siwo xɔ ƒe ɖesiaɖe, alo ame tsitsiwo dzi.

Aleke wowɔa dea dzesi AT/RT?

Ðɔkta dea dzesi AT/RT to ŋutilãdodokpɔ, ahɔhɔ̃mekadodokpɔ, kple dodokpɔ tɔxɛ ʋɛ bubu aɖewo wɔwɔ me. Le dodokpɔ gbãtɔ siawo me la, ɖɔktaa abia nya wò tso viwòa ƒe dzesiwo, atikewɔwɔ ŋutinya siwo va yi, kple nenye be dɔléle sia nɔ wò ƒomea me dometɔ aɖe ŋu.

Tsɔ kpe ɖe eŋu la, dodokpɔ siwo wowɔnae nye:

• MRI (Magnetic Resonance Imaging) scan: Esia ate ŋu aɖe ahɔhɔ̃ kple aklã ƒe foto tsitotsito. Esia ate ŋu akpe ɖe ame ŋu woanya afisi tututu dɔdzẽa le kple eƒe lolome.
• Akɔta ƒe dodo: Esia bia be woaɖe tsi si ƒo xlã aklãa (ahɔhɔ̃metsi) ƒe kpɔɖeŋu sue aɖe eye woadoe kpɔ be kansa lãmenugbagbeviwo kaka hã.
• Domenyiŋusẽfianu dodokpɔ:Wowɔa dodokpɔ sia be woakpɔe ɖa be tɔtrɔ aɖewo va le SMARCB1 alo SMARCA4 domenyiŋusẽfianu siwo míeyɔ va yi me hã.
• Biopsy: Esia bia be woaɖe dɔdzẽa ƒe akpa sue aɖe atsɔ adoe kpɔ le nusuekpɔmɔ̃ me atsɔ aɖo kpe kansa ƒomevi si le eŋu dzi.

Nukawoe nye atike siwo wozãna na AT/RT?

Viwò ƒe ɖɔkta ate ŋu aɖo aɖaŋu na wò be woatsɔ atike siwo gbɔna na AT/RT:

Amekoko be woaɖe dɔdzẽa ɖa

Ahɔhɔ̃ŋutinunyala aɖe dɔdzẽa ɖa alesi wòate ŋui to amekoko me. Gake ate ŋu ahiã be woazã atikewɔmɔnu kple keklẽŋusẽdɔdamɔnu hã be woatsɔ atsrɔ̃ kansadɔlékui ɖesiaɖe si susɔ le amekokoa megbe.

Atikewo zazã

Esia nye atike ƒomevi aɖe si wua kansa lãmenugbagbeviwo alo xea mɔ na wo be womama o. Ɣeaɖewoɣi la, wodoa atike sia to nu me alo doa atike ɖe ʋuka alo lãmeka me (systemic chemotherapy). Mɔ bubue nye be woado atike la ɖe tsi si ƒo xlã aklãa me tẽ (intrathecal chemotherapy).

Kekeli ƒe Dɔdamɔnu

Esia zãa X-ray siwo ŋu ŋusẽ geɖe le tsɔ wua kansa lãmenugbagbeviwo alo xea mɔ na wo be woagatsi o. Mɔ̃ aɖe fiaa mɔ keklẽŋusẽ siawo yia dɔdzẽa gbɔ pɛpɛpɛ. Wonaa keklẽŋusẽdɔdamɔnu ɖevi siwo mexɔ ƒe 3 haɖe o le agbɔsɔsɔ si le sue ŋutɔ me elabena ate ŋu akpɔ ŋusẽ ɖe woƒe tsitsi kple tsitsi dzi.

Lãmenugbagbeviwo Dodo Ðe Ame Ŋu

Le atikewɔmɔnu gbogbo aɖewo zazã vɔ megbe la, wodoa lãmenugbagbeviwo na ame bubu be woatsɔ aɖɔli lãmenugbagbevi siwo bu le ɖevia ƒe ŋutilã me. Hafi atikewɔmɔnu nadze egɔme la, ɖɔktawo xɔa lãmenugbagbevi aɖewo le ɖevia si hedzraa wo ɖo. Emegbe ne wowu atikewɔmɔnu zazã nu la, wogbugbɔa lãmenugbagbeviawo dea ɖevia me to ʋuka aɖe me (to ʋuka me).

Atikewɔwɔ si Woɖo Ðe Ame Ŋu

Esia nye AT/RT ƒe atike yeye si wole dodokpɔ wɔm le dɔdamɔnuwo me fifia. Le esia me la, atike aɖewo wɔa dɔ to mɔxexe ɖe nu aɖewo siwo kpena ɖe kansadɔlékuiwo ŋu wotsina hemãna la nu.

Dɔlélenutsiŋutete ƒe atikewɔwɔ

Esia hã nye atike si wole dodokpɔ wɔm le AT/RT ŋu fifia. Ewɔa dɔ to kpekpeɖeŋu nana ɖevia ŋutɔ ƒe dɔlélenutsiŋutete be wòawɔ avu kple kansa la me.

Dɔlélenutsitsidɔ

Wowɔa esia be woatsɔ aɖe ɖevia ƒe dzesiwo dzi akpɔtɔ, aɖe vevesese dzi akpɔtɔ, ana gbɔdzɔe, eye wòana woƒe agbenɔnɔ nanyo ɖe edzi.

Vevietɔ: Ðɔktaa awɔ dodokpɔ siawo katã eye wòatso nya me le atikewɔwɔ si nyo na viwòa ŋu. Ɣeaɖewoɣi la, woate ŋu awɔ atike siwo wu ɖeka. Ele vevie be woayi edzi anɔ atikewɔlawo ƒe dzikpɔkpɔ te eye woado wo kpɔ le atikewɔwɔ vɔ megbe. Aleae nàte ŋu akpɔe ɖa be atikewɔwɔa kpɔ dzidzedze eye ne kansa la gatrɔ gbɔ.

Amekae le viwòa ƒe atikewɔlawo ƒe ƒuƒoƒoa me?

Àte ŋu akpɔ ɖɔkta kple lãmesẽdɔwɔla vovovowo ne èle AT/RT dam. Viwò ƒe atikewɔlawo ƒe ƒuƒoƒoa ate ŋu anye:

• Ðeviwo ƒe dɔdalawo alo ƒome ƒe ɖɔktawo (Atikewɔla siwo kpɔa dɔnɔwo gbɔ gbã) .
• Ahɔhɔ̃mekaŋutinunyalawo
• Kansaŋutinunyala siwo zãa keklẽŋusẽ
• Ahɔhɔ̃ŋutinunyalawo
• Domenyiŋusẽfianu ŋuti aɖaŋuɖolawo

Ðe atikewɔwɔa ƒe nugbegblẽ aɖewo lia?

Ẽ, nugbegblẽ le ame ŋu ate ŋu ado mo ɖa le AT/RT ƒe atikewɔwɔwo katã me. Viwòa ƒe ɖɔkta aɖe nusiwo nye nugbegblẽ le ame ŋu siawo kple nusiwo ŋu wòle be nàkpɔ nyuie le le atikewɔwɔ me la me na wò. Nu gbegblẽ aɖewo ate ŋu ado mo ɖa enumake, evɔ bubuwo ya madze o vaseɖe ɣleti aɖewo megbe hafi. Ne nya aɖe le asiwò la, mègahe ɖe megbe le wò ɖɔkta biabia me o.

Nukae nye AT/RT ƒe Nukpɔsusu/Nyagblɔɖi?

AT/RT nye kansa ƒomevi si nu sẽ ŋutɔ, si kakana kabakaba, eye ne womate ŋu ada atikewɔwɔ keŋkeŋ o la, ɖevia ƒe agbe ate ŋu awu enu kaba. Ke hã, esia toa vovo tso ame ɖeka gbɔ yi bubu gbɔ ŋutɔ. Le kpɔɖeŋu me, ne woate ŋu aɖe dɔdzẽa ɖa keŋkeŋ to amekoko me la, mɔnukpɔkpɔ li be woadae.

Nu geɖee fiaa mɔkpɔkpɔa:

• Viwò ƒe ƒexɔxɔ.
• Domenyiŋusẽfianu ƒe domenyinu.
• Aleke woate ŋu aɖe dɔdzẽa ɖa dedie to amekoko me?
• Ne kansa la kaka ɖe ŋutilã ƒe akpa bubuwo hã.

Wò ɖɔkta koe ate ŋu ana nyatakaka siwo de pɛpɛpɛ wu tso viwòa ƒe ŋgɔdonya ŋu. Ne nya aɖe le asiwò la, ƒo nu kple viwòa ƒe atikewɔlawo ƒe ƒuƒoƒo.

Nukae nye agbetsitsi kple dɔyɔyɔ ƒe agbɔsɔsɔme na AT/RT?

Esi wònye be AT/RT nye kansa ƒomevi si mebɔ o ta la, nyatakaka siwo sɔ gbɔ be woagblɔ agbetsitsi kple dɔyɔyɔ ƒe agbɔsɔsɔme ɖi na dɔléle sia pɛpɛpɛ o. Viwòa ƒe ɖɔkta ate ŋu ana nyatakaka yeyetɔ kekeake wò ku ɖe viwòa ƒe nɔnɔmea ŋu.

Ðe woate ŋu axe mɔ ɖe AT/RT nua?

Nublanuitɔe la, mɔ aɖeke meli si dzi woato axe mɔ ɖe AT/RT nu fifia o. Ne èle mɔ kpɔm be yeadzi vi bubu la, anyo be nàƒo nu kple domenyiŋusẽfianu ŋuti aɖaŋuɖola aɖe be yeanya ne domenyiŋusẽfianu ƒe tɔtrɔ si ate ŋu ahe AT/RT vɛ le wò alo wò zɔhɛa ŋu kple afɔku si le viwòa ƒe domenyinyi me.

Nya kawoe wòle be nàbia viwòa ƒe ɖɔkta?

Enye nusi sɔ be nyabiase geɖe nanɔ susu me na wò ne èsrɔ̃ nu tso AT/RT ŋu vɔ. Kpɔ egbɔ be yebia nya siawo viwò ƒe ɖɔkta:

• Afikae dɔdzẽ si le vinyea ƒe ŋutilã ŋu le?
• Atikewɔwɔ ka ƒomevie nèkafu?
• Ðe atikewɔwɔa ƒe nugbegblẽ aɖewo lia?
• Ðe atikewɔwɔa akpɔ ŋusẽ ɖe vinyea ƒe tsitsi kple eƒe tsitsi dzia?
• Nukae nye vinye ƒe ŋgɔdonya?

Mlɔeba la, nu vevitɔ kekeake (Take-Home Message) .

"Kansa le viwò ŋu." Esiawo nye nya sesẽtɔ kekeake siwo dzila ate ŋu ase la dometɔ aɖewo. Ðewohĩ àtsi dzi ɖe nusi ava dzɔ emegbe ŋu, ɖe viwòa ƒe etsɔme ŋu. Togbɔ be kakaɖedzimanɔamesi geɖe li siwo dona tso kansa me hã la, ɖo ŋku edzi be viwòa ƒe atikewɔlawo ƒe ƒuƒoƒoa le gbɔwò le afɔɖeɖe ɖesiaɖe me. Woakpe ɖe ŋuwò nàzɔ atikewɔwɔ me, akpɔ dzesiwo gbɔ, eye woakpɔ viwòa dzi le woƒe agbemeŋkekewo katã me. Numekukuwo yi edzi le nu geɖe srɔ̃m tso AT/RT (atypical teratoid/rhabdoid tumor) ŋu eye wole mɔ yeye siwo dzi woato adae dim. Eyata, mègana mɔkpɔkpɔ gbeɖe o.

` AT/RT, ahɔhɔ̃ me kansa, ɖevime kansa, kansa ƒe dzesiwo, kansa dada, domenyiŋusẽfianu ƒe tɔtrɔ, lãmekawo ƒe dɔwɔwɔ