Ingaba umntwana wakho unethumba lobuchopho elinje? Masiqaphele (iGanglioglioma)!

Ngaba umntwana wakho omncinci unesithuthwane ngequbuliso? Okanye uhlala ekhalaza ukuba intloko yakhe ibuhlungu xa evuka kusasa? Kuqhelekile ukuba wena njengomzali uzive usoyika kakhulu xa ubona izinto ezinje. Ngamanye amaxesha ezi zinokuba ziimpawu zethumba elincinci engqondweni. Yiyo loo nto namhlanje sicinge ngokuthetha ngolu hlobo lungaqhelekanga lwethumba lobuchopho olubizwa ngokuba yiGanglioglioma . Ungakhathazeki, siza kuthetha ngale nto ngokweenkcukacha nangokulula.

Yintoni le Ganglioglioma?

Ngamafutshane, iGanglioglioma luhlobo olungaqhelekanga kakhulu lwethumba lobuchopho. Lwenziwe ngokudibanisa iintlobo ezimbini zeeseli: iiseli ze-neuronal kunye neeseli ze-glial .

Cinga ngayo, ingqondo yethu ifana nomatshini ontsonkothileyo kakhulu.

• Iiseli zemithambo-luvo zifana neengcingo ezithwala ulwazi zibuyela umva kulo matshini. Ezi seli zinoxanduva lokuthwala ulwazi kuyo yonke imizimba yethu.
• Iiseli zeGlial zifana nabasebenzi abancedisayo abanceda ukugcina ezo ntambo zisendaweni yazo. Zenza ulwakhiwo lwenkqubo yethu yemithambo-luvo ephakathi , kwaye zisebenza kunye nee-neurons ukuzinceda zisebenze.

IiGangliogliomas zikwabizwa ngokuba zii-mixed neuronal-glial tumors kuba zenzeka ngokudityaniswa kweentlobo zombini zeeseli. Zihlala zibonakala ebantwaneni nakubantu abadala abancinci .

Iindaba ezimnandi zezokuba uninzi lwexesha, ezi gangliogliomas zincinci, zikhula kancinci, kwaye azinazo umhlaza (zingenobungozi) . Oku kuthetha ukuba azisasazeki kwezinye iindawo zomzimba. Nangona kunjalo, nokuba azinazo umhlaza, zinokubangela iingxaki kuba zikwingqondo, ngoko ke unyango luyimfuneko.

Uninzi lwee-gangliogliomas zihlelwa njengee -gliomas ezikumgangatho ophantsi . Ii-gliomas ziithumba ezikhula engqondweni okanye emgogodleni ngenxa yokukhula okungalawulekiyo kweeseli ze-glial. Ngenxa yokuba zikumgangatho ophantsi, azinawo umhlaza kwaye zinomngcipheko omncinci wokuphinda zivele.

Nangona kunjalo, kunqabile kakhulu, ezi Gangliogliomas zinokuba zezinga eliphezulu . Kwimeko enjalo, zinokuba yingozi . Zinoburhalarhume ngakumbi, zisasazeka ngokukhawuleza, kwaye zinokwenzeka ukuba ziphinde zibuye emva konyango.

Ngaba kukho iintlobo ezahlukeneyo ze-gangliogliomas? Zenzeka phi?

Iigangliogliomas zifumaneka kakhulu kwiindawo zengqondo yakho ezikufutshane neendlebe zakho, ezibizwa ngokuba zii-temporal lobes . Nangona kunjalo, zinokukhula naphi na engqondweni. Umzekelo:

• Ubuchopho - Eyona nxalenye inkulu yobuchopho bethu.
• I-Brainstem - Indawo apho ingqondo kunye nomqolo zidibana khona.
• I-Cerebellum - inxalenye elawula ibhalansi.
• I-Thalamus
• I-Hypothalamus

Akupheleli apho, ngamanye amaxesha la mathumba anokwakheka nakwi-spinal cord .

Kukho olunye uhlobo olungaqhelekanga kakhulu, olubizwa ngokuba yiDesmoplastic Infantile Ganglioglioma . Olu hlobo ludla ngokukhula kwinxalenye ephezulu yengqondo kubantwana abancinci abangaphantsi kweminyaka emi-2 ubudala .

Ixhaphake kangakanani le sifo?

I-Ganglioglioma yimeko engaqhelekanga kakhulu. Umzekelo, eMelika, malunga nabantwana abangama-4,000 abangaphantsi kweminyaka eli-19 ubudala bafunyanwa bene-tumor yobuchopho okanye yomgogodla minyaka le. Nangona kunjalo, malunga ne-1% ukuya kwi-2% kuphela yabo bantwana bane-gangliogliomas. Ngoko ke, oku akuqhelekanga kangako.

Zithini iimpawu zoku?

Njengoko benditshilo ngaphambili, ekubeni ezi thumba zihlala zikhula kwi-temporal lobes, kukho amathuba aphezulu okuba nesifo sokuwa . Ngoko ke, ukuxhuzula mhlawumbi luphawu lokuqala olubonayo kumntwana wakho.

Ezinye iimpawu zihlala zikhula kancinci kancinci. Ezi mpawu zinokwahluka ngokuxhomekeke ekubeni ithumba likuphi engqondweni:

• Intloko ebuhlungu , ingakumbi xa uvuka kusasa.
• Isicaphucaphu nokuhlanza .
• Ubunzima bokuginya .
• Umbono ophindwe kabini .
• Ukuhamba okungazinzanga .
• Ukuziva udiniwe (Ukudinwa) .
• Isiyezi .
• Ubuthathaka kwelinye icala lomzimba wakho .

Ukuba umntwana wakho unenye okanye ngaphezulu kwezi mpawu, kungcono ukubona ugqirha ngokukhawuleza uze uhlolwe.

Kutheni le Ganglioglioma ikhula?

Kwiimeko ezininzi, kunzima ukufumana unobangela othile wokukhula kwezi Gangliogliomas. Oku kuthetha ukuba zikhula ngokungacwangciswanga.

Nangona kunjalo, abaphandi bafumanise ukuba utshintsho lwemfuza kwi-BRAF gene lufumaneka phakathi kwe-10% kunye ne-60% yezi gangliogliomas. Nangona kunjalo, olu tshintsho lwemfuza lunokufumaneka nakwezinye iintlobo zeethumba, ngoko ke akunakwenzeka ukutsho ngokuqinisekileyo ukuba le yimbangela ethile ye-gangliogliomas.

Ziziphi izinto ezibangela umngcipheko wale meko?

Abantwana abaneemeko ezithile zemfuza basengozini enkulu kancinci yokuba neethumba ze-glial, kuquka ne-ganglioglioma. Ezinye zezi meko ziquka:

• Uhlobo lwe-Neurofibromatosis 1 (NF1)
• I-Tuberous sclerosis
• Isifo seTurcot
• Isifo seLi-Fraumeni
• Isifo sikaVon Hippel-Lindau

Ukongeza, idatha ibonisa ukuba abafana ngokubanzi banamathuba amaninzi okufumana iithumba zobuchopho kunye nomqolo kunamantombazana, kwaye abantwana abamhlophe bakhula ezi thumba rhoqo kunabantwana bezinye iintlanga.

Uyibona njani le nto kanye kanye?

Ukuba umntwana wakho unezi mpawu, ugqirha uya kuqala enze uvavanyo olucokisekileyo lomzimba , aze emva koko akubuze ngeempawu zomntwana wakho kunye nembali yakhe yezonyango.

Emva koko, kwenziwa uvavanyo lwemithambo-luvo . Olu vavanyo luvavanya indlela umntwana asabela ngayo, amandla ezihlunu, iintshukumo zomlomo namehlo, ingqondo, kunye nokulungelelaniswa kwezinto.

Emva kwezi mvavanyo zokuqala, ugqirha uya kucebisa ezinye iimvavanyo ezininzi ukuqinisekisa ukuxilongwa:

• I-CT scan (i-computed tomography - i-CT scan) : Oku kusebenzisa uthotho lwee-X-rays kunye nekhompyutha ukuthatha imifanekiso yengqondo yomntwana enqamlezileyo.
• I-MRI scan (Brain magnetic resonance imaging - MRI scan) : Oku kusebenzisa imagnethi enamandla, amaza erediyo, kunye nekhompyutha ukuvelisa imifanekiso eneenkcukacha ezininzi zobuchopho. Oku kubaluleke kakhulu ekumiseleni indawo echanekileyo kunye nobukhulu bethumba.
• I-EEG (i-Electroencephalogram - i-EEG) : Olu vavanyo lulinganisa imiqondiso yombane kunye nomsebenzi wengqondo yomntwana. Oku kunokunceda ekufumaneni unobangela wokuxhuzula, ingakumbi ukuba kukuxhuzula.
• I-Biopsy : Ngamanye amaxesha, kuxhomekeke kwimeko yomntwana, ugqirha wemithambo-luvo angenza i-biopsy. Oku kuquka ukususa iqhekeza elincinci kakhulu lesicubu kwithumba, nokuba kungotyando okanye ngokusikwa okuncinci, kwaye lihlolwe phantsi kwe-microscope yingcali yezifo . Ukongeza, le sampuli yesicubu ingathunyelwa kwezinye iimvavanyo ezikhethekileyo, ezinje ngovavanyo lwe-genomic . Oku kunokunceda ekuchongeni uhlobo oluchanekileyo lwesicubu.

Iphathwa njani iGanglioglioma?

Ukuqinisekisa ukuba umntwana wakho ufumana unyango olungcono, kungcono ukubathumela kwiziko lezonyango labantwana . Kuya kufuneka ubone ingcali yomhlaza wabantwana eqinisekisiweyo yibhodi okanye ingcali yonyango lwe-neuro-oncologist yabantwana enamava okunyanga ii-gangliogliomas.

Unyango olunikwa umntwana luxhomekeke kwizinto ezininzi:

• Impilo yomntwana iyonke, ubudala bakhe, kunye neemeko zempilo esele zikhona.
• Uhlobo lwethumba, indawo elikuyo engqondweni, kunye nobukhulu balo.
• Ubunzima bethumba.
• Indlela umntwana anokukwazi ngayo ukunyamezela unyango oluthile, utyando, okanye amayeza.
• Indlela eli thumba eliza kuqhubeka ngayo njengoko oogqirha belindele.

Unyango lokuqala ludla ngokuba lutyando lokususa ithumba. Ugqirha uya kuzama ukususa ithumba elininzi kangangoko kunokwenzeka. Nangona kunjalo, ngamanye amaxesha ukuba ithumba likwindawo ebuthathaka kakhulu engqondweni, kunokuba nzima ukulisusa ngokupheleleyo.

Khawucinge nje, ukuba ithumba alinakususwa ngokupheleleyo, kwaye ukuba likwizinga eliphezulu, oogqirha banokusebenzisa unyango lwemitha .

• Unyango lwemitha : Oku kusebenzisa ii-X-reyi ezinamandla aphezulu okanye ezinye iintlobo zemitha ukubulala iiseli zomhlaza okanye ukuzithintela ekukhuleni okanye ekwahlukaneni. Olu nyango lunokujolisa ngqo kwindawo ekuyo ithumba kwaye lunikezele ngemitha. Olu nyango lunokucetyiswa ukuba ithumba likhula kancinci (liqhubela phambili) okanye ukuba libuyile emva kotyando (liphinda libuye).
• Unyango lweKhemotherapy : Oku kuquka ukunika unyango lwamayeza abulala okanye anciphisa iiseli zomhlaza.
• Unyango olujoliswe kuko : Olu lunyango olusebenzisa amayeza. Nangona kunjalo, olu nyango lusebenzisa amayeza ajolise kuphela kuphawu oluthile kwithumba. Ii-gangliogliomas ezininzi zineempawu ezithile, ezifana nokuguqulwa kwezakhi zofuzo ze-BRAF esithethe ngazo ngaphambili. Ezi ndlela zonyango ezijoliswe kuko zinokutshabalalisa ezo zimpawu.

Ngamanye amaxesha, oogqirha banokucebisa ukuba abantwana abaneethumba eziphindaphindayo ezingaphenduliyo kwezinye iindlela zonyango bathunyelwe kwiimvavanyo zeklinikhi , eziluphando oluvavanya unyango olutsha.

Ithini ingqikelelo?

Oku koko abazali abaninzi bafuna ukukwazi. Izinga lokusinda iminyaka emihlanu kumntwana one-ganglioglioma lingaphezulu kwe-90% . Oku kuthetha ukuba umntwana unethuba elihle kakhulu lokusinda kwiminyaka emihlanu emva kokuba efunyenwe enesifo.

Nangona kunjalo, eli thuba lokuchacha lixhomekeke kwizinto ezahlukeneyo, ezifana nomgangatho wesimila, ubudala bomntwana, kunye nendawo esikuyo isimila engqondweni.

Ngaba likho ithuba lokubuyela umva? (Ukubuyela umva)

Ngaphezulu kwe-95% yee-gangliogliomas azinazinga liphantsi , nto leyo ethetha ukuba akunakwenzeka ukuba ziphinde zivele emva kokuba ithumba lisusiwe ngokupheleleyo.

Nangona kunjalo, iithumba ezikumgangatho ophezulu, ezifana ne -Ganglioglioma yebanga lesi-3, zinethuba eliphezulu lokuphinda zivele emva kotyando.

Ngaba oku kungathintelwa ukuba kwenzeke?

Ngelishwa, abaphandi abakayazi kakuhle ukuba kutheni abanye abantwana befumana iiGangliogliomas kanti abanye bengenazo. Ke ngoko, okwangoku akukho ndlela yokuthintela esi sifo ukuba singabikho..

Ndingamsa nini umntwana wam kwagqirha ?

Ukuba umntwana wakho unesithuthwane ngequbuliso, okanye ukuba ubonakalisa enye okanye ngaphezulu kwezinye iimpawu endizikhankanyileyo ngaphambili kweli nqaku (ezifana neentloko ezibuhlungu zasekuseni, isicaphucaphu, ubunzima bokuhamba), kubalulekile ukuba umntwana wakho amse kugqirha ngokukhawuleza ukuze ahlolwe .

Iimpawu zeGanglioglioma zinokufana nezezinye izifo, ngoko ke kubalulekile ukubona ugqirha ukuze ufumane ukuxilongwa ngokuchanekileyo ukuze wazi kakuhle ukuba kwenzeka ntoni.

Yeyiphi imibuzo omele uyibuze ugqirha?

Xa ufumanisa ukuba umntwana wakho une-ganglioglioma, kuyinto eqhelekileyo ukuba nemibuzo emininzi engqondweni yakho. Nazi ezinye zemibuzo onokumbuza ugqirha:

• Luhlobo luni lweGanglioglioma umntwana wam analo?
• Ingaba ngumhlaza?
• Le thumba iza kuyichaphazela njani ingqondo nempilo yomntwana wam?
• Ziziphi iindlela zonyango?
• Ngaba ungacebisa amaqela enkxaso anceda iintsapho zabantwana abane-ganglioglioma?

Okokugqibela, izinto ekufuneka uzikhumbule...

"Umntwana wakho unesifo somhlaza ebuchotsheni." Ukuva loo mazwi kunokuvakala ngathi ngumzuzu oqandisiweyo ngexesha. Ngomzuzu omnye othusayo, ubomi bakho bunokuziva ngathi butshintshe ngonaphakade.

Kodwa, ungalahli ithemba. Nangona la mazwi esoyikisa kwaye esoyikisa, khumbula ukuba uninzi lwee-gangliogliomas azingomhlaza, zizimila ezikumgangatho ophantsi.

Kungokwemvelo ukoyika xa umntwana wakho exelelwa ukuba unethumba, kwaye ngokuqinisekileyo kufuneka unyango. Nangona kunjalo, umntwana wakho unethuba elingcono lokuphelisa eli thumba kungekudala . Thetha nogqirha womntwana wakho malunga nemeko yakhe kunye noqikelelo lwesifo. Baza kukunika lonke ulwazi oludingayo.

I- Ganglioglioma, iithumba zobuchopho, abantwana, ukuxhuzula, isifo sokuwa, utyando lobuchopho, umhlaza