Mwana wenyu ane bundu remuuropi rakadai here? (Diffuse Intrinsic Pontine Glioma - DIPG) Tingataura nezveizvi here?

Zvakajairika kunzwa kushushikana kukuru kana uchifunga nezvehutano hwemwana wako. Dzimwe nguva, tinonetseka zvikuru patinonzwa nezvezvirwere zvinobata vana. Nhasi, tichataura nezvegomarara remuuropi rakakomba zvishoma, asi zvakakosha kuriziva. Rinonzi diffuse intrinsic pontine glioma, kana kuti ``DIPG'' muchidimbu.

Chii chinonzi DIPG? Zita iri rinorevei?

Kunyange zvazvo zita iri ringaita serakareba zvishoma, kuziva zvarinoreva kunogona kukupa pfungwa yechirwere ichi. Ngatitarisei zvinorehwa nezvikamu zvaro.

• Kupararira: Izvi hazvina kufanana nebundu panzvimbo imwe chete. Masero egomarara anopararira uye anosanganiswa nemasero ane hutano. Zvakafanana nekuisa donhwe redhayi mugirazi remvura, rinopararira mugirazi rese. Ndosaka zvichinetsa kubvisa nekuvhiyiwa. Nekuti hazvigoneke kubvisa masero aya akapararira pasina kukuvadza zvikamu zvine hutano.
• Chimiro chemukati: Izvi zviri mukati meuropi hwemwana. Kureva kuti, zvakabatana nazvo uye zvinopinda mukati-kati.
• Pontine: Pontine zvinoreva chikamu cheuropi chinonzi pons. Iyi pons inzvimbo yakakosha zvikuru. Inodzora zvinhu zvakakosha mumuviri wedu kuti tirarame, zvakaita seBP, kurova kwemoyo, uye kufema. Kwete izvozvo chete, asi inodzorawo zvinhu zvakaita sekuona, kunzwa, kutaura, uye kuenzana. Saka ichi ndicho chimwe chezvikonzero nei mabundu aya e`(DIPG)` aine njodzi.
• Glioma: Glioma ibundu rinokura kana masero eglial aita kenza. Aya masero eglial imhando yesero rinodzivirira masero etsinga, kana kuti ma neuron, muhurongwa hwedu hwepakati hwetsinga (CNS).

Zvichitaurwa zviri nyore, DIPG ibundu rakaipa rinobva mumasero eglial ari mupons, chikamu cheuropi hwemwana. Rinoonekwa seglioma rinokura nekukurumidza uye repamusoro .

Ndeupi musiyano uripo pakati peDIPG neDMG (Diffuse Midline Glioma)?

Ungave wakambonzwawo nezve `(Diffuse Midline Glioma - DMG)`. Kare, mazwi `(DIPG)` uye `(DMG)` aishandiswa zvakafanana. `(DIPG)` zvakare ndeyechikamu che `(DMG)`. Rudzi rwe `(DMG)` runokura pakati pehuropi. Kureva kuti, munzvimbo dzakadai se `(Pons)`, `(Thalamus)` uye `(Spinal Cord)`. Zvisinei, `(DIPG)` inokura zvakananga munzvimbo ye `(Pons)`.

Ose ari maviri maglioma epamusoro-soro. Zvisinei, pane musiyano pakati pezviviri izvi. Pakurapa mwana wako, chiremba wako achafunga nezvekusiyana uku kuti asarudze kuti ndeipi mishonga yakakunakira.

Ndiani anowana DIPG? Yakajairika zvakadii?

Mabundu aya anogona kukura muvana vezera ripi zvaro, zvisinei nekuti murume kana mukadzi. Zvisinei, anowanzoonekwa muvana vari pakati pemakore mashanu nepfumbamwe.

Vakuru vanogonawo kuva neDIPG, asi hazviwanzoitiki.

Ichi chirwere chisingawanzoitiki. Kunyangwe munyika yakaita seAmerica, vana 150 kusvika 300 chete ndivo vanoonekwa vaine chirwere ichi gore rega rega. Mazhinji emagliomas anokura muvana "haana giredhi rakaderera", zvichireva kuti anogona kurapwa uye kurapwa. Zvisinei, angangoita 10% emabundu europi evana ndiwo rudzi urwu rune njodzi runonzi "DIPG".

Ndezvipi zviratidzo zveDIPG?

Nekuda kwekuti bundu iri, rinonzi ``DIPG'', rinokura nekukurumidza, zviratidzo zvinotanga kuoneka nekukurumidza. Rambai muchitarisa zviratidzo izvi mumwana wenyu:

• Matambudziko emaziso: kuona zvisipo, kuona zvinhu zviviri, kufamba kwemaziso kusingadzoreki, maziso emaziso akarembera.
• Musoro: Musoro, kunyanya mangwanani. Dzimwe nguva, kurwadziwa uku kunoderera mushure mekurutsa.
• Matambudziko ekufamba: Kuomerwa nekufamba, kurasikirwa nechiyero (ataxia), uye kusashanda zvakanaka kwetsandanyama. Sekusakwanisa kuramba wakarara pasi.
• Kurembera kana kushaya simba kune rumwe rutivi rwechiso .
• Kuomerwa nekutsenga nekumedza chikafu.
• Kunzwa kushaya simba mumakumbo . Zvinoita sekunge ruoko rwako rwarasikirwa nesimba kamwe kamwe kana kuti gumbo rako raoma kufamba.
• Kusvotwa nekurutsa.
• Kunzwa sekuti kutaura kwako kwakanganiswa , kusakwanisa kubatanidza mazwi ako zvakanaka (kutaura kwakashata).

Kana chimwe chezviratidzo izvi chikaonekwa kamwe kamwe uye chikawedzera nekukurumidza, zvakakosha zvikuru kuona chiremba nekukasika.

Chii chinokonzera DIPG?

Zvichitaurwa zviri nyore, zvinoitika muDIPG ndezvekuti masero anofanirwa kukura kuita masero eglial anova masero ekenza. Masero aya ekenza anokura nekukurumidza uye asingadzoreki.

Kusiyana nekenza zhinji, chirwere ichi chinonzi "DIPG" chinoita sechisina chekuita nezvinhu zvinokonzera njodzi zvakatipoteredza zvakaita seutsi hwefodya kana mwaranzi. Kureva kuti, hazvisati zvanyatsoonekwa kuti zvinokonzerwa nechimwe chinhu chinoitwa nevabereki kana chimwe chinhu chiri munharaunda.

Zvisinei, kana mwana wako aine chirwere chisingawanzoitiki chakadai seLi-Fraumeni syndrome, njodzi yacho inogona kunge yakakwira zvishoma. Uyewo, dzimwe shanduko dzemajini, dzinonzi mutations, mumasero dzinogona kukonzera DIPG. Iye zvino zvaonekwa kuti kuchinja kweprotein inonzi H3K27M kunogona kukonzera kuti masero aya eglial ave nekenza.

DIPG inoonekwa sei?

Kazhinji, biopsy, inova sampuli yenyama inotorwa kuti iongororwe kenza, inodiwa. Zvisinei, izvi hazvigoneke nguva dzose kana paine DIPG. Izvi zvinodaro nekuti nzvimbo yebundu iri inobatwa zvakanyanya. Saka, vanachiremba vanowanzoongorora DIPG nekutarisa zviratidzo zvemwana pamwe chete nezvidzidzo zvemifananidzo.

• Kuskena kweMRI (Magnetic Resonance Imaging):MRI inogona kuburitsa mifananidzo yakajeka yegomarara remwana. Inogonawo kuona kana gomarara racho rapararira kupfuura pons. Gomarara reDIPG rinotaridzika zvakasiyana paMRI. Nyanzvi yeX-ray ine ruzivo inogona kurisiyanisa nemamwe magomarara emuuropi.
• Kuongororwa kweBoopsy yeStereotactic: Dzimwe nguva, kana zvakachengeteka kuita izvozvo, chiremba anogona kushandisa chinhu chidiki, chakaita sechubhu kuti atore chidimbu chidiki chebundu kuti chiongororwe (biopsy). Zvisinei, kazhinji, kutora chidimbu chenyama kubva muponi dziri muuropi kune njodzi huru nekuti kunogona kukuvadza uropi. Kana uri kuongororwa neDIPG, zvinofanirwa kungoitwa muchipatara chinoita rudzi urwu rwemaitiro nguva dzose uye chine ruzivo munharaunda iyi.

DIPG inorapwa sei?

Izvi zvinosuwisa kunzwa, asi mishonga iripo haigone kurapa zvachose `(DIPG)`. Zvisinei, mishonga iyi inogona kuwedzera hupenyu hwemwana kwenguva yakati, kuderedza zviratidzo uye kupa zororo kumwana. Huro yeuropi inzvimbo yakagadzirwa netsinga dzinodzora mabasa akakosha mumuviri wedu. Saka kana ukaedza kubvisa bundu nekuvhiyiwa, tsinga idzi dzinokosha dzinogona kukuvara.

Saka, vanachiremba vanokurudzira mamwe marapirwo asina kuvhiyiwa:

• Kurapa nemwaranzi: Uku ndiko kurapwa kukuru kwe (DIPG). Mukuita izvi, muchina unoshandisa mwaranzi kuparadza masero ekenza. Unoedzawo kuderedza kukuvara kwenyama yakakomberedza ine hutano. Kurapa nemwaranzi kunoderedza bundu, kunouraya masero ekenza, uye kunoderedza zviratidzo. Mwana wako angangowana kurapwa nemwaranzi zuva rega rega kwemavhiki angangoita matanhatu.
• Corticosteroids: Chiremba wako anogona kukupa mhando yemushonga unonzi corticosteroids mwana wako asati apiwa kana kuti mushure mekurapwa nemwaranzi. Mishonga iyi inogona kubatsira kuderedza kuzvimba muuropi uye kubatsira kudzora zviratidzo. Inogonawo kubatsira kuderedza kuzvimba mushure mekurapwa nemwaranzi. Zvisinei, corticosteroids inogona kuva nemigumisiro yakaipa. Izvi zvinosanganisira kuwedzera kwekudya, kuwedzera huremu, uye kuchinja-chinja kwemanzwiro. Taura nachiremba wako kuti unzwisise mabhenefiti nenjodzi dzemishonga iyi.
• Kurapa nemakemikari: Kurapa nemakemikari ekenza kwakajairika hakushandi zvakanyanya paDIPG. Zvisinei, dzimwe nguva chiremba wako anogona kukurudzira mwana wako kuti atore chikamu mumiedzo yekiriniki inosanganisa chemotherapy nemwaranzi.
• Kutarisirwa kwevarwere vane marwadzo emusana:Nyanzvi dzekuchengetedza varwere vane dambudziko rekurwadziwa kwemoyo dzinogona kushanda newe nachiremba wako kugadzira hurongwa hwekutarisira hunowedzera hupenyu hwemwana wako. Vanogona kukupa rutsigiro rwezvekurapa, rwepfungwa, uye rwemweya iwe, mwana wako, nemhuri yako kana muchibata chirwere chakadai seDIPG.

Chiremba wako anogonawo kukurudzira kuti mwana wako anyoreswe muchirongwa chekiriniki . Chirongwa chekiriniki chidzidzo chinoongorora kuti mishonga mitsva yakachengeteka uye inoshanda sei. Vatsvagurudzi vakaona humwe hunhu hwemasero ekenza (DIPG). Mishonga mitsva inotarisa hunhu ihwohwo - semuenzaniso , kurapwa kwakanangana nemolecular uye immunotherapy - inogona kuwanikwa kuburikidza nechirongwa chekiriniki.

Semuenzaniso, vaongorori vanoziva kuti masero mazhinji egomarara ane shanduko inonzi (H3K27M) mujini rekuti "DIPG". Mishonga mitsva, yekuedza inonanga masero egomarara nekuchinja uku (nezvimwe) yatove kugadzirwa uye kuyedzwa mukuyedzwa kwekiriniki.

Ko DIPG inogona kurapwa here?

Kwete, Diffuse Intrinsic Pontine Glioma (DIPG) haigone kurapwa. Kurapa kunoshanda zvakanyanya kuripo parizvino ndiko kurapwa nemwaranzi. Kurapa nemwaranzi yeDIPG kunogona kuwedzera hupenyu hwemwana uye kuvandudza kwenguva pfupi zviratidzo uye hupenyu hwakanaka. Kurapa kutsva uye kunoshanda zvakanyanya kunodiwa kuti kenza iyi irambe ichikura.

Mwana ane DIPG anogona kurarama kwenguva yakareba sei?

Ndinoziva kuti izvi zvakaoma kunzwa. Pasina kurapwa, vana vazhinji vanorarama kwemwedzi inosvika mitanhatu mushure mekuonekwa vaine chirwere ichi. Kurapwa nemwaranzi kunogona kuwedzera nguva iyi kusvika kumwedzi mipfumbamwe kusvika gumi nerimwe. Vana vasingasviki 10% vanorarama kupfuura makore maviri. Zvakajairika kunzwa kusuruvara paunonzwa nhamba idzi, asi zvakakosha kuyeuka kuti mwana wese akasiyana.

Mibvunzo ipi yandinofanira kubvunza chiremba?

Shandai pamwe chete nachiremba wenyu kuti munzwisise hurongwa hwekuchengeta mwana wenyu nezvinhu zvichakanganisa ramangwana rake. Musatya kubvunza chero mibvunzo yamunayo. Heano mimwe mibvunzo yamunogona kubvunza:

• Ndeapi marapirwo amunokurudzira? Chii chatingatarisira kubva kwavari?
• Mwana wangu achada kurapwa kangani?
• Kangani mwana wangu paanofanira kuuya kuzoongororwa kuti aone kufambira mberi kwegomarara?
• Tingagadzirisa sei migumisiro yakaipa yekurapwa kwegomarara?
• Munogona here kutibatanidza nemasangano ekubatsira varwere vane matambudziko epfungwa nepfungwa?
• Pane tsvakurudzo itsva here kana miedzo yekiriniki iyo mwana wangu anogona kutora chikamu mairi?

Pakupedzisira, zvinhu zvekurangarira (Mharidzo Yekuenda Kumba)

Kuwana kuti mwana wako ane Diffuse Intrinsic Pontine Glioma (DIPG) kunogona kuva chimwe chezvinhu zvakaoma zvikuru zvaunonzwa semubereki. Marwadzo, kutya, uye kuzvidya mwoyo kwaunonzwa kunogona kukukurira. Asi yeuka kuti hausi wega panguva ino.

Paunenge uchiita sarudzo dzekurapa mumwedzi iri kuuya, shandisa rubatsiro rwese rwauinarwo nezvinhu zviripo. Taura pachena navanachiremba vemwana wako nezvezvaunotarisira nechirwere ichi. Kana uchikwanisa, taura nenyanzvi dzinopa rubatsiro rwekuderedza kushushikana. Kumbira rubatsiro kushamwari nemhuri. Pamusoro pezvose, ramba wakabatana nemwana wako. Taura naye, tamba naye, uye mupe rudo. Muudze kuti uri naye nhanho imwe neimwe yerwendo.

Munguva dzino dzakaoma, zvakakosha kufunga nezvako uye kutarisira hutano hwako hwepfungwa. Kana ukaramba wakasimba, mwana wako achavawo akasimba. Hausi wega, tese tiri newe.

` Diffuse intrinsic pontine glioma, DIPG, kenza yeuropi, kenza yevana, pons, radiation therapy, palliative care