Ðe ahɔhɔ̃meka aɖe le viwòa ŋu abe esia enea? (Diffuse Intrinsic Pontine Glioma - DIPG) Ðe míaƒo nu tso esia ŋua?

Enye nusi sɔ be nàse nuteɖeamedzi gã aɖe ne èle viwò suea ƒe lãmesẽ ŋu bum. Ɣeaɖewoɣi la, míetsia dzimaɖi ŋutɔŋutɔ ne míese dɔléle siwo gblẽa nu le ɖeviwo ŋu. Egbea, míele nu ƒom tso ahɔhɔ̃meka aɖe si nu sẽ vie wu ŋu, gake ele vevie be míanɔ ŋudzɔ. Woyɔnɛ be diffuse intrinsic pontine glioma, alo ``DIPG'' kpuie.

Nukae nye DIPG? Nukae ŋkɔ sia fia?

Togbɔ be ŋkɔ sia adze abe ɖe wòdidi vie ene hã la, gɔmesese si le eŋu nyanya ate ŋu ana nànya nu tso dɔléle sia ŋu vie. Na míalé ŋku ɖe gɔmesese si le eƒe akpawo ŋu ŋu.

• Kaka: Esia mele abe ƒunukpeƒetetedɔ si le teƒe ɖeka ene o. Kansa lãmenugbagbeviwo kaka eye wotsaka kple lãmenugbagbevi siwo le lãmesẽ me. Ðeko wòle abe ne ètsɔ amadede aɖe de tsi kplu me la, ekaka ɖe kplu bliboa me ene. Esia tae esesẽna ŋutɔ be woaɖee ɖa ne wowɔ dɔ nɛ. Elabena manya wɔ be woaɖe lãmenugbagbevi siawo siwo kaka la ɖa evɔ womagblẽ nu le akpa siwo le lãmesẽ me ŋu o.
• Nusi le eme: Esia le ɖevia ƒe ahɔhɔ̃meka me. Eyae nye be edo ƒome kplii eye wògena ɖe ememe goglo.
• Pontine: Pontine fia ahɔhɔ̃meka ƒe akpa si woyɔna be pons. Pons sia nye teƒe vevi aɖe ŋutɔ. Ekpɔa ŋusẽ ɖe nu vevi siwo le míaƒe ŋutilã me abe ʋu ƒe sisi, dzi ƒe tsotso, kple gbɔgbɔ ene dzi. Menye ema ɖeɖeko o, ke ekpɔa ŋusẽ ɖe nuwo abe nukpɔkpɔ, nusese, nuƒoƒo, kple dadasɔ hã dzi. Eyata esia nye susu siwo tae `(DIPG)` dɔdzẽ siawo nye afɔku alea gbegbe ɖo la dometɔ ɖeka.
• Glioma: Glioma nye dɔdzẽ si dona ne glial lãmenugbagbeviwo va zu kansa. Glial lãmenugbagbevi siawo nye lãmenugbagbevi ƒomevi aɖe si kpɔa lãmekawo, alo ahɔhɔ̃mekawo, siwo le míaƒe lãmekawo ƒe dɔwɔwɔ ƒe ɖoɖo (CNS) me ta.

Kpuie ko la, DIPG nye dɔdzẽ vɔ̃ɖi aɖe si dona tso glial cells siwo le pons, si nye ɖevi ƒe ahɔhɔ̃meka ƒe akpa aɖe me. Wobua eŋu be enye glioma si le dzidzim ɖe edzi kabakaba, si ƒe dzesi deŋgɔ .

Vovototo kae le DIPG kple DMG (Diffuse Midline Glioma) dome?

Ðewohĩ èse `(Diffuse Midline Glioma - DMG)` hã. Tsã la, wozãa nya siwo nye `(DIPG)` kple `(DMG)` tsɔ ɖɔlia wo nɔewo. `(DIPG)` hã ​​le `(DMG)` ƒe hatsotso me. `(DMG)` ƒomevi la dona le ahɔhɔ̃a ƒe titina. Eyae nye be, le teƒewo abe `(Pons)`, `(Thalamus)` kple `(Akɔta)`. Ke hã, `(DIPG)` doa ŋgɔ le `(Pons)` nutoa me koŋ.

Wo ame evea siaa nye glioma siwo ƒe dzesi deŋgɔ. Ke hã, vovototo aɖewo le wo ame evea dome. Ne èle atike wɔm na viwòa la, wò ɖɔkta abu vovototo siawo ŋu atsɔ atso nya me le atikewɔwɔ si nyo na wò ŋu.

Amekae xɔa DIPG? Aleke gbegbe wòbɔe?

Dɔdzẽ siawo ate ŋu adze ɖevi siwo xɔ ƒe ɖesiaɖe dzi, eɖanye ŋutsu alo nyɔnu o. Gake zi geɖe la, ɖevi siwo xɔ tso ƒe 5 va ɖo ƒe 9 mee wokpɔa wo le.

Ame tsitsiwo hã ate ŋu axɔ DIPG, gake ƒã ŋutɔ.

Le nyateƒe me la, esia nye nɔnɔme si mebɔ kura o. Le dukɔ abe Amerika ene gɔ̃ hã me la, ɖevi 150 va ɖo 300 koe wokpɔna be dɔdzẽ sia ƒomevi le wo ŋu ƒe sia ƒe. Gliomas akpa gãtɔ siwo dona le ɖeviwo me nye ``low-grade'', si fia be woateŋu ada wo ahada wo. Ke hã, ɖeviwo ƒe ahɔhɔ̃ me dɔdzẽ siwo ade 10% koe nye afɔku ƒomevi sia si woyɔna be ``DIPG''.

Nukae nye DIPG ƒe dzesiwo?

Esi wònye be dɔdzẽ sia si woyɔna be ``DIPG'' tsina kabakaba ŋutɔ ta la, dzesiwo dzea egɔme dzena kabakaba. Lé ŋku ɖe dzesi siawo ŋu le viwòa ŋu:

• Ŋku ƒe kuxiwo: ŋku ƒe nukpɔkpɔ si me kɔ o, ŋku ƒe ʋuʋu zi eve, ŋku ƒe ʋuʋu si dzi womeɖu o, ŋkume ƒe ʋuʋu.
• Taɖuame: Taɖuame, vevietɔ le ŋdi me. Ɣeaɖewoɣi la, vevesese sia nu fa le aɖuɖɔɖɔɖɔ vɔ megbe.
• Azɔlizɔzɔ ƒe kuxiwo: Azɔlizɔzɔ sesẽ, dadasɔ (ataxia), kple lãmekawo ƒe dɔwɔwɔ ɖekae dzi ɖeɖe kpɔtɔ. Abe alesi màte ŋu ana wò afɔwo nanɔ anyigba o ene.
• Mo ƒe akpa ɖeka ƒe ŋeŋe alo gbɔdzɔgbɔdzɔ .
• Nuɖuɖu ɖuɖu kple mimi sesẽ.
• Gbɔdzɔgbɔdzɔ ƒe seselelãme le abɔ kple afɔwo ŋu . Ewɔna nam abe ŋusẽ meganɔa alɔnu ŋu zi ɖeka alo afɔ ʋuʋu sesẽe ene.
• Aɖuɖɔtoe kple ʋuʋudedi.
• Sese le ɖokuiwò me abe wò nuƒoƒo le ɣli dom ene , màte ŋu aƒo wò nyawo nu ƒu nyuie o (nuƒoƒo si me mekɔ o).

Ne dzesi siawo dometɔ ɖeka alo esi wu nenema do kpata eye wòdzi ɖe edzi kabakaba la, ele vevie ŋutɔ be nàyi ɖɔkta gbɔ enumake.

Nukae hea DIPG vɛ?

Kpuie ko la, nusi dzɔna le DIPG mee nye be lãmenugbagbevi siwo wosusu be woatsi azu glial lãmenugbagbeviwo zua kansa lãmenugbagbeviwo. Emegbe kansa lãmenugbagbevi siawo tsina kabakaba eye womate ŋu aɖu wo dzi o.

To vovo na kansa akpa gãtɔ la, edze abe nɔnɔme sia si woyɔna be ``DIPG'' medo ƒome kple nutome ƒe afɔkuwo abe sigaret ƒe dzudzɔ alo keklẽŋusẽ o ene. Eyae nye be womekpɔ nya haɖe nenye be nane si dzilawo wɔna alo nane si le nutoa me gbɔe wòtso o.

Gake ne dɔléle aɖe si mebɔ o abe Li-Fraumeni ƒe dɔléle ene le viwòa ŋu la, afɔkua ate ŋu asɔ gbɔ vie. Azɔ hã, domenyiŋusẽfianu ƒe tɔtrɔ aɖewo, siwo woyɔna be domenyiŋusẽfianu ƒe tɔtrɔ, le lãmenugbagbeviwo me ate ŋu ahe DIPG vɛ. Wova kpɔe azɔ be protein aɖe si woyɔna be H3K27M ƒe tɔtrɔ ate ŋu ana glial lãmenugbagbevi siawo nazu kansa.

Aleke wowɔna dea dzesi DIPG?

Zi geɖe la, ehiãna be woaɖe ŋutilã ƒe akpa aɖe, si nye lãmenugbagbevi siwo woɖe be woatsɔ ado kansa kpɔ. Gake menye ɣesiaɣie esia ate ŋu adzɔ le DIPG gome o. Esia le alea elabena afisi dɔdzẽa le la sea veve ŋutɔ. Eyata zi geɖe la, ɖɔktawo dea dzesi DIPG to ŋkuléle ɖe ɖevia ƒe dzesiwo ŋu tsɔ kpe ɖe nɔnɔmetatawo ŋuti numekuku tɔxɛwo ŋu.

• MRI (Magnetic Resonance Imaging) ƒe fotoɖeɖefia:MRI ate ŋu ana ɖevia ƒe dɔdzẽ ƒe nɔnɔmetata siwo me kɔ ŋutɔ. Ate ŋu anya hã nenye be dɔdzẽa kaka yi ŋgɔ wu pons. DIPG dɔdzẽ ƒe dzedzeme to vovo vie le MRI me. Kekeliŋutinunyala bibi ate ŋu ade vovototoe tso ahɔhɔ̃mekawo ƒe dɔdzẽ bubuwo gbɔ.
• Stereotactic Biopsy: Ɣeaɖewoɣi la, ne esia wɔwɔ le dedie la, ɖɔkta ate ŋu azã dɔwɔnu sue aɖe si le tsɛ si le abe mɔ̃ ene atsɔ axɔ dɔdzẽa ƒe akpa sue aɖe atsɔ adoe kpɔ (biopsy). Gake zi geɖe la, lãmenugbagbevi aɖe ɖeɖe tso pons si le ahɔhɔ̃meka me nyea afɔku gã aɖe elabena ate ŋu agblẽ nu le ahɔhɔ̃mekaa ŋu. Ne wole ŋutilã ƒe lãmenugbagbeviwo ƒe dodokpɔ wɔm na wò hena DIPG la, kɔdzi si wɔa dɔ sia ƒomevi edziedzi eye wòbi ɖe dɔa me ko hafi wòle be nàwɔe.

Aleke wowɔa atike na DIPG?

Esia nye nublanuinya vie be woase, gake atikewɔwɔ siwo li fifia mate ŋu ada `(DIPG)` keŋkeŋ o. Ke hã, atikewɔmɔnu siawo ate ŋu ana ɖevia ƒe agbenɔƒe nadidi ɖe edzi hena ɣeyiɣi aɖe, aɖe dɔlélea ƒe dzesiwo dzi akpɔtɔ eye wòana gbɔdzɔe ɖevia. Ahɔhɔ̃ ƒe ke nye teƒe si lãmeka siwo kpɔa dɔ vevi ŋutɔ siwo le míaƒe ŋutilã me dzi le. Eyata ne èdze agbagba be yeaɖe dɔdzẽa ɖa to amekoko me la, lãmeka vevi siawo ate ŋu agblẽ.

Eyata ɖɔktawo kafu atike bubu siwo menye amekoko o:

• Kekeli ƒe atikewɔwɔ: Esiae nye atikewɔwɔ vevitɔ na (DIPG). Le esia me la, mɔ̃ aɖe zãa keklẽŋusẽ aɖe tsɔ tsrɔ̃a kansa lãmenugbagbeviwo. Edzea agbagba hã be yeaɖe nusiwo gblẽ le lãmeka siwo le lãmesẽ me siwo ƒo xlãe ŋu dzi akpɔtɔ. Kekeli-dɔdamɔnu ɖea dɔdzẽa dzi kpɔtɔna, ewua kansa lãmenugbagbeviwo, eye wòɖea dzesiwo dzi kpɔtɔna. Anɔ eme be woado keklẽŋusẽdɔdamɔnu na viwòa gbesiagbe abe kwasiɖa ade ene.
• Corticosteroids: Wò ɖɔkta ate ŋu ana atike ƒomevi aɖe si woyɔna be corticosteroids wò do ŋgɔ na viwòa ƒe keklẽŋusẽdɔdada alo le ewɔwɔ vɔ megbe. Atike siawo ate ŋu akpe ɖe ame ŋu be ahɔhɔ̃a ƒe vuvu dzi naɖe akpɔtɔ eye wòakpe ɖe ame ŋu wòaɖu dzesiawo dzi. Woate ŋu akpe ɖe ame ŋu hã be woaɖe abi dzi akpɔtɔ le keklẽŋusẽdɔdada vɔ megbe. Gake corticosteroids ate ŋu agblẽ nu le ame ŋu. Esiawo dometɔ aɖewoe nye nuɖuɖudzroame ƒe dzidziɖedzi, lolo, kple seselelãme ƒe tɔtrɔ. Ƒo nu kple wò ɖɔkta be nàse atike siawo ƒe viɖe kple afɔku siwo le wo me gɔme.
• Atikewɔwɔ: Atikewɔwɔ abe atikewɔmɔnu na kansa siwo bɔ ene mewɔa dɔ boo aɖeke na DIPG o. Gake ɣeaɖewoɣi la, wò ɖɔkta ate ŋu aɖo aɖaŋu na viwòa be wòakpɔ gome le dɔdamɔnu dodokpɔ siwo me wotsɔa atikewɔmɔnu kple keklẽŋusẽdɔdamɔnu ƒoa ƒui me.
• Beléle na ame ƒe dziɖeɖi:Dɔwɔla siwo kpɔa viwòa gbɔ ate ŋu awɔ dɔ kple wò kple wò ɖɔkta awɔ belélename ƒe ɖoɖo si ana viwòa ƒe agbenɔnɔ nanyo ɖe edzi. Woate ŋu ana atikewɔwɔ, susuŋutinunya, kple gbɔgbɔ me kpekpeɖeŋu si wò, viwò, kple wò ƒomea hiã ne èle nu wɔm kple dɔléle aɖe si wokpɔ abe DIPG ene.

Wò ɖɔkta ate ŋu ado susua ɖa hã be woaŋlɔ viwò ŋkɔ ɖe dɔdamɔnu dodokpɔ aɖe me . Dɔdamɔnu dodokpɔ nye numekuku si doa alesi atikewɔwɔ yeyewo le dedie eye wowɔa dɔ nyuie la kpɔna. Numekulawo de dzesi (DIPG) kansa lãmenugbagbeviwo ƒe nɔnɔme aɖewo. Atike yeye siwo woɖo taɖodzinu na nɔnɔme mawo – le kpɔɖeŋu me , molecule targeted therapy kple immunotherapy – ateŋu anɔ anyi to dɔdamɔnu dodokpɔ me.

Le kpɔɖeŋu me, numekulawo nya be kansa lãmenugbagbevi geɖewo ƒe tɔtrɔ si woyɔna be (H3K27M) le domenyiŋusẽfianu ``DIPG'' me. Wole atike yeye siwo wodo kpɔ, siwo tɔa ŋku kansa lãmenugbagbevi siwo ŋu tɔtrɔ sia le (kple bubuwo) la wɔm xoxo hele wo dom kpɔ le dɔdamɔnu dodokpɔwo me.

Ðe woate ŋu ada DIPGa?

Ao, womate ŋu ada Diffuse Intrinsic Pontine Glioma (DIPG) o. Atikewɔwɔ si wɔa dɔ wu si li fifiae nye keklẽŋusẽdɔdamɔnu. Kekeli ƒe atikewɔwɔ na DIPG ate ŋu ana ɖevi ƒe agbenɔƒe nadidi ɖe edzi eye wòana dzesiwo kple agbenɔnɔ nanyo ɖe edzi hena ɣeyiɣi aɖe. Atikewɔwɔ yeye siwo wɔa dɔ wu hiã be woatsɔ ana kansa sesẽ sia ƒe ŋgɔdonya nanyo ɖe edzi.

Ɣeyiɣi didi kae ɖevi si ŋu DIPG le ate ŋu anɔ agbe?

Menya be nya sia sese sesẽ. Ne womewɔ atike nɛ o la, ɖevi akpa gãtɔ nɔa agbe abe ɣleti ade ene le dɔlélea kpɔkpɔ vɔ megbe. Zi geɖe la, keklẽŋusẽdɔdamɔnu ate ŋu adidi ɣeyiɣi sia ɖe edzi va ɖo ɣleti enyi va ɖo wuiɖekɛ. Ðevi siwo mede 10% o nɔa agbe wu ƒe eve. Enye nusi sɔ be nàlé blanui ne èse akɔntabubu siawo, gake ele vevie be nàɖo ŋku edzi be ɖevi ɖesiaɖe to vovo.

Nya kawoe wòle be mabia ɖɔktaa?

Wɔ dɔ kple wò ɖɔkta kplikplikpli be nàse viwòa dzikpɔkpɔ ƒe ɖoɖo kple nusiwo akpɔ ŋusẽ ɖe eƒe etsɔme dzi gɔme. Mègavɔ̃ be yeabia nya aɖeke si le asiwò o. Nyabiase aɖewo siwo nàte ŋu abiae nye esi:

• Atikewɔwɔ kawoe nèkafu? Nukae míate ŋu akpɔ mɔ na tso wo gbɔ?
• Zi nenie vinyea ahiã atikewɔwɔ?
• Zi nenie wòahiã be vinyea nava be yeakplɔe ɖo be yealé ŋku ɖe kansa la ƒe ŋgɔyiyi ŋu?
• Aleke míewɔna kpɔa kansadɔdamɔnu ƒe nugbegblẽ le ame ŋu gbɔe?
• Àte ŋu atsɔ mí aƒo ka na dɔlélenutsiŋutete ƒe dɔwɔƒewo kple kpekpeɖeŋunahawoa?
• Ðe numekuku alo dɔdamɔnu dodokpɔ yeye aɖewo li siwo me vinyea ate ŋu akpɔ gome lea?

Mlɔeba la, nusiwo dzi wòle be woaɖo ŋkui (Take-Home Message) .

Ne ènya be Diffuse Intrinsic Pontine Glioma (DIPG) le viwò ŋu la, ate ŋu anye nu sesẽtɔ kekeake siwo nàte ŋu ase abe dzila ene la dometɔ ɖeka. Vevesese, vɔvɔ̃, kple dzimaɖitsitsi si nèsena le ɖokuiwò me ate ŋu agbɔ eme. Gake ɖo ŋku edzi be menye wò ɖeka koe le ɣeyiɣi sia me o.

Ne èle atikewɔwɔ ŋuti nyametsotsowo wɔm le ɣleti siwo gbɔna me la, wɔ kpekpeɖeŋu kple nunɔamesi siwo katã li na wò la ŋudɔ. Ðo dze kple viwò ƒe ɖɔktawo gaglãa tso nusi nàkpɔ mɔ na le dɔléle sia ŋu. Ne àte ŋui la, ke te ɖe eŋutinunyala siwo naa beléle si naa ame ƒe dzi dzea eme ŋu. Bia kpekpeɖeŋu tso xɔlɔ̃wo kple ƒometɔwo gbɔ. Ƒo wo katã ta la, nɔ kadodo me kple viwòa. Ðo dze kplii, fe kplii, eye nàna lɔlɔ̃e. Na wòanya be yele ye gbɔ le mɔa ƒe afɔɖeɖe ɖesiaɖe me.

Le ɣeyiɣi sesẽ siawo me la, ele vevie be nàbu ɖokuiwò ŋu ahalé be na wò susu ƒe lãmesẽ. Ne èyi edzi sẽ ŋu la, viwòa hã asẽ ŋu. Menye wò ɖeka koe o, mí katã míele kpli wò.

` Diffuse intrinsic pontine glioma, DIPG, ahɔhɔ̃ me kansa, ɖevime kansa, pons, keklẽŋusẽ ƒe atikewɔwɔ, beléle na ame ƒe dziɖeɖi