Ingaba umntwana wakho une-tumor yobuchopho efana nale? (Diffuse Intrinsic Pontine Glioma - DIPG) Singathetha ngale nto?

Kuqhelekile ukuba uzive uxinezelekile kakhulu xa ucinga ngempilo yomntwana wakho omncinci. Ngamanye amaxesha, siyakhathazeka kakhulu xa sisiva ngezifo ezichaphazela abantwana. Namhlanje, siza kuthetha ngethumba lobuchopho elibi kakhulu, kodwa kubalulekile ukuliqaphela. Libizwa ngokuba yi-diffuse intrinsic pontine glioma, okanye ``DIPG'' ngamafutshane.

Yintoni iDIPG? Lithetha ukuthini eli gama?

Nangona eli gama lisenokubonakala lide kancinci, ukwazi intsingiselo yalo kunokukunika umbono othile ngesi sifo. Makhe sijonge intsingiselo yamacandelo alo.

• Ukusasazeka: Oku akufani neqhuma kwindawo enye. Iiseli zomhlaza zisasazeka kwaye zidityaniswe neeseli eziphilileyo. Kufana nokuba xa ufaka ithontsi ledayi kwiglasi yamanzi, lisasazeka kuyo yonke iglasi. Yiyo loo nto kunzima kangaka ukulisusa ngotyando. Kuba akunakwenzeka ukususa ezi seli zisasazekayo ngaphandle kokonakalisa iindawo eziphilileyo.
• Ingaphakathi: Oku kufumaneka ngaphakathi kwengqondo yomntwana. Oko kukuthi, kuqhagamshelwe kuyo kwaye kungena nzulu ngaphakathi.
• IPontine: IPontine ibhekisa kwinxalenye yesiseko sobuchopho ebizwa ngokuba yi-pons. Le pons yindawo ebaluleke kakhulu. Ilawula izinto ezibalulekileyo emzimbeni wethu, ezinje ngoxinzelelo lwegazi, ukubetha kwentliziyo, kunye nokuphefumla. Ayipheleli apho, kodwa ikwalawula nezinto ezinje ngokubona, ukuva, intetho, kunye nokulinganisela. Ngoko ke le yenye yezizathu zokuba ezi `(DIPG)` ziyingozi kangaka.
• I-Glioma: I-glioma sisimila esikhula xa iiseli ze-glial zisiba ngumhlaza. Ezi seli ze-glial luhlobo lweseli olukhusela iiseli zemithambo-luvo, okanye ii-neurons, kwinkqubo yethu yemithambo-luvo ephakathi (CNS).

Ngamafutshane, i-DIPG sisimila esinobungozi esivela kwiiseli ze-glial kwi-pons, inxalenye yesiqu sobuchopho bomntwana. Sithathwa njenge-glioma ekhula ngokukhawuleza nekumgangatho ophezulu .

Yintoni umahluko phakathi kwe-DIPG kunye ne-DMG (i-Diffuse Midline Glioma)?

Usenokuba ukhe weva nge-`(Diffuse Midline Glioma - DMG)`. Ngaphambili, amagama athi `(DIPG)` kunye ne-`(DMG)` ayesetyenziswa ngokutshintshana. `(DIPG)` nawo akwicandelo le-`(DMG)`. Uhlobo lwe-`(DMG)` lukhula kwiindawo eziphakathi zobuchopho. Oko kukuthi, kwiindawo ezifana ne-`(Pons)`, `(Thalamus)` kunye ne-`(Spinal Cord)`. Nangona kunjalo, `(DIPG)` lukhula ngokukodwa kwindawo ye-`(Pons)`.

Zombini zii-gliomas zezinga eliphezulu. Nangona kunjalo, kukho umahluko phakathi kwezi zimbini. Xa unyanga umntwana wakho, ugqirha wakho uya kuqwalasela la mahluko ukuze agqibe ukuba loluphi unyango olulungele wena.

Ngubani ofumana i-DIPG? Ixhaphake kangakanani?

Ezi thumba zinokukhula ebantwaneni bayo nayiphi na iminyaka, nokuba bangobani na ngokwesini. Nangona kunjalo, zihlala zifunyaniswa kubantwana abaneminyaka ephakathi kwemi-5 ne-9 ubudala.

Abantu abadala nabo banokuba ne-DIPG, kodwa ayiqhelekanga kakhulu.

Esi sisifo esingaqhelekanga ngokwenene. Kwanakwilizwe elifana neMelika, ngabantwana abali-150 ukuya kuma-300 kuphela abafunyaniswa benale hlobo lwethumba minyaka le. Uninzi lwee-gliomas ezikhula ebantwaneni "zikwizinga eliphantsi", oko kuthetha ukuba zinokunyangwa kwaye zinyangeke. Nangona kunjalo, malunga ne-10% kuphela yeethumba zobuchopho zabantwana ezilolu hlobo luyingozi olubizwa ngokuba yi-"DIPG".

Zithini iimpawu ze-DIPG?

Ngenxa yokuba le thumba, ebizwa ngokuba yi-"DIPG", ikhula ngokukhawuleza, iimpawu ziqala ukubonakala ngokukhawuleza. Hlala ulumkele ezi mpawu kumntwana wakho:

• Iingxaki zamehlo: ukubona okufipheleyo, ukubona kabini, iintshukumo zamehlo ezingalawulekiyo, iinkophe ezigobileyo.
• Intloko ebuhlungu: Intloko ebuhlungu, ingakumbi kusasa. Ngamanye amaxesha, le ntlungu iyaphela emva kokuhlanza.
• Ubunzima bokuhamba: Ubunzima bokuhamba, ukulahlekelwa yibhalansi (ataxia), kunye nokungasebenzi kakuhle kwemisipha. Njengokungakwazi ukugcina iinyawo zakho ziphantsi.
• Ukuwa okanye ubuthathaka kwelinye icala lobuso .
• Ubunzima bokuhlafuna nokuginya ukutya.
• Ukuziva ubuthathaka kwimilenze . Kuvakala ngathi uphelelwa ngamandla ngequbuliso engalweni okanye ubunzima bokushukumisa umlenze.
• Isicaphucaphu nokuhlanza.
• Ukuziva ngathi intetho yakho ayicacanga , awukwazi ukuhlanganisa amagama akho ngokufanelekileyo (intetho engacacanga).

Ukuba enye okanye ezingaphezulu kwezi mpawu zibonakala ngequbuliso kwaye zanda ngokukhawuleza, kubaluleke kakhulu ukubona ugqirha ngokukhawuleza.

Yintoni ebangela i-DIPG?

Ngamafutshane, okwenzekayo kwi-DIPG kukuba iiseli ezimele ukuba zikhule zibe ziiseli ze-glial ziba ziiseli zomhlaza. Ezi seli zomhlaza emva koko zikhula ngokukhawuleza nangokungalawulekiyo.

Ngokungafaniyo noninzi lomhlaza, le meko ibizwa ngokuba yi-"DIPG" ayibonakali inxulumene nezinto ezinobungozi kwindalo ezifana nomsi wecuba okanye imitha. Oko kukuthi, akukaqinisekiswa ukuba ingaba ibangelwa yinto eyenziwa ngabazali okanye yinto ethile kwindalo esingqongileyo.

Nangona kunjalo, ukuba umntwana wakho unesimo esingaqhelekanga njenge-Li-Fraumeni syndrome, umngcipheko unokuba phezulu kancinci. Kwakhona, utshintsho oluthile lwemfuza, olubizwa ngokuba zii-mutations, kwiiseli lunokubangela i-DIPG. Ngoku kufunyenwe ukuba utshintsho kwiproteni ebizwa ngokuba yi-H3K27M lunokubangela ukuba ezi seli ze-glial zibe ngumhlaza.

Ifunyaniswa njani i-DIPG?

Ngokwesiqhelo, kufuneka i-biopsy, eyisampuli yezicubu ezithathiweyo ukuze kuvavanywe umhlaza. Nangona kunjalo, oku akunakwenzeka rhoqo kwimeko ye-DIPG. Oku kungenxa yokuba indawo yethumba inobuthathaka kakhulu. Ke ngoko, oogqirha badla ngokuxilonga i-DIPG ngokujonga iimpawu zomntwana kunye nezifundo ezikhethekileyo zomfanekiso.

• Iskeni se-MRI (Magnetic Resonance Imaging):I-MRI inokuvelisa imifanekiso ecacileyo yethumba lomntwana. Ingaqinisekisa nokuba ithumba lisasazeke ngaphaya kwee-pons. Ithumba le-DIPG libonakala lahlukile kancinci kwi-MRI. Ingcali ye-radiology enamava ingalihlula kwezinye iithumba ze-brainstem.
• I-Stereotactic Biopsy: Ngamanye amaxesha, ukuba kukhuselekile ukwenza njalo, ugqirha angasebenzisa isixhobo esincinci, esincinci esifana netyhubhu ukuthatha iqhekeza elincinci lethumba ukuze livavanywe (i-biopsy). Nangona kunjalo, kwiimeko ezininzi, ukuthatha iqhekeza lethishu kwi-pons kwi-brainstem kuyingozi kakhulu kuba kunokonakalisa i-brainstem. Ukuba wenza i-biopsy ye-DIPG, kufuneka yenziwe kuphela esibhedlele esenza olu hlobo lwenkqubo rhoqo kwaye sinolwazi kuloo ndawo.

Iphathwa njani i-DIPG?

Oku kuyadanisa kancinci ukuva, kodwa unyango lwangoku alunakunyanga ngokupheleleyo `(DIPG)`. Nangona kunjalo, olu nyango lunokwandisa ubomi bomntwana okwethutyana, lunciphise iimpawu kwaye lunike umntwana isiqabu. Isiqu sobuchopho yindawo eyenziwe yimithambo-luvo elawula imisebenzi ebalulekileyo emzimbeni wethu. Ngoko ke ukuba uzama ukususa ithumba ngotyando, ezi zakhiwo zemithambo-luvo zinokonakala.

Ngoko ke, oogqirha bacebisa ezinye iindlela zonyango ezingezizo ezotyando:

• Unyango ngemitha: Olu lolona nyango luphambili lwe-(DIPG). Kule meko, umatshini usebenzisa umqadi wemitha ukutshabalalisa iiseli zomhlaza. Ukwazama ukunciphisa umonakalo kwizicubu eziphilileyo ezijikelezileyo. Unyango ngemitha lunciphisa ithumba, lubulale iiseli zomhlaza, kwaye lunciphise iimpawu. Umntwana wakho uya kufumana unyango ngemitha yonke imihla kangangeeveki ezintandathu.
• IiCorticosteroids: Ugqirha wakho angakunika uhlobo lwamayeza abizwa ngokuba yi-corticosteroids ngaphambi okanye emva konyango lomntwana wakho ngemitha. La mayeza anokunceda ukunciphisa ukudumba engqondweni kwaye ancede ukulawula iimpawu. Anokunceda ekunciphiseni ukudumba emva konyango lwemitha. Nangona kunjalo, ii-corticosteroids zinokuba neziphumo ebezingalindelekanga. Ezi ziquka ukwanda kokutya, ukunyuka kobunzima, kunye nokutshintsha kweemvakalelo. Thetha nogqirha wakho ukuze uqonde iingenelo kunye neengozi zala mayeza.
• Unyango lweKhemotherapy: Unyango olufana nekhemotherapy yomhlaza oqhelekileyo alusebenzi kakuhle kwi-DIPG. Nangona kunjalo, ngamanye amaxesha ugqirha wakho unokucebisa ukuba umntwana wakho athathe inxaxheba kuvavanyo lweklinikhi oludibanisa ikhemotherapy kunye nonyango lwemitha.
• Ukhathalelo lokudambisa intlungu:Iingcali zokhathalelo lwentlungu zingasebenza nawe kunye nogqirha wakho ukwenza isicwangciso sokhathalelo esiya kuphucula umgangatho wobomi bomntwana wakho. Banokubonelela ngenkxaso yezonyango, yengqondo, neyokomoya oyidingayo wena, umntwana wakho, kunye nosapho lwakho xa nijongene nokuxilongwa okufana ne-DIPG.

Ugqirha wakho angacebisa ukuba umntwana wakho abhaliswe kuvavanyo lweklinikhi . Uvavanyo lweklinikhi luphononongo oluvavanya indlela unyango olutsha olukhuselekileyo nolusebenza ngayo. Abaphandi bachonge iimpawu ezithile zeeseli zomhlaza (DIPG). Unyango olutsha olujolise kwezo mpawu - umzekelo , unyango olujoliswe kwimolekyuli kunye nonyango lwe-immunotherapy - lunokufumaneka ngovavanyo lweklinikhi.

Umzekelo, abaphandi bayazi ukuba iiseli ezininzi zomhlaza zinenguqu ebizwa ngokuba yi-(H3K27M) kwi-gene ``DIPG''. Iindlela ezintsha zonyango ezivavanyiweyo ezijolise kwiiseli zomhlaza ngolu tshintsho (kunye nezinye) sele ziphuhlisiwe kwaye zivavanywa kwiimvavanyo zeklinikhi.

Ngaba i-DIPG inganyangeka?

Hayi, i-Diffuse Intrinsic Pontine Glioma (DIPG) ayinakunyangwa. Unyango olusebenzayo olukhoyo ngoku lunyango lwemitha. Unyango lwemitha lwe-DIPG lunokwandisa ubomi bomntwana kwaye luphucule okwethutyana iimpawu kunye nomgangatho wobomi. Kufuneka unyango olutsha nolusebenzayo ukuphucula ukubikezela kwangaphambili kwesi sifo somhlaza esinzima.

Umntwana one-DIPG angaphila ixesha elingakanani?

Ndiyazi ukuba oku kunzima ukukuva. Ngaphandle konyango, uninzi lwabantwana luphila malunga neenyanga ezintandathu emva kokuba bexilongiwe. Unyango lwemitha lunokwandisa eli xesha ukuya kwiinyanga ezisithoba ukuya kwezilishumi elinanye. Ngaphantsi kwe-10% yabantwana baphila ngaphaya kweminyaka emibini. Kuqhelekile ukuba buhlungu xa usiva ezi zibalo, kodwa kubalulekile ukukhumbula ukuba wonke umntwana wahlukile.

Ndingayibuza yiphi imibuzo ugqirha?

Sebenzisana ngokusondeleyo nogqirha wakho ukuze uqonde isicwangciso sokunyamekela umntwana wakho kunye nezinto eziza kuchaphazela ikamva lakhe. Musa ukoyika ukubuza nayiphi na imibuzo onayo. Nazi ezinye zemibuzo onokuyibuza:

• Zeziphi iindlela zonyango ozicebisayo? Yintoni esinokuyilindela kuzo?
• Umntwana wam uza kufuna unyango kangaphi?
• Kuza kufuneka umntwana wam eze kangaphi kwintlanganiso yokulandelela ukuze ajonge inkqubela phambili yomhlaza?
• Sizilawula njani iziphumo ebezingalindelekanga zonyango lomhlaza?
• Ungasiqhagamshela kwiinkonzo zokhathalelo lwentlungu kunye namaqela enkxaso?
• Ngaba kukho uphando olutsha okanye iimvavanyo zonyango umntwana wam anokuthi athathe inxaxheba kuzo?

Okokugqibela, izinto ekufuneka uzikhumbule (Umyalezo Wokuya Ekhaya)

Ukufumanisa ukuba umntwana wakho une-Diffuse Intrinsic Pontine Glioma (DIPG) kunokuba yenye yezona zinto zinzima onokuziva njengomzali. Intlungu, uloyiko, kunye noxinzelelo oluzivayo lunokuba nzima kakhulu. Kodwa khumbula ukuba awuwedwa ngeli xesha.

Njengoko usenza izigqibo zonyango kwiinyanga ezizayo, sebenzisa lonke uncedo kunye nezixhobo ezikhoyo kuwe. Thetha ngokukhululekileyo noogqirha bomntwana wakho malunga nento onokuyilindela ngesi sifo. Ukuba unako, qhagamshelana neengcali ezibonelela ngononophelo lokudambisa iintlungu. Cela uncedo kubahlobo nakusapho. Ngaphezu kwako konke, hlala unxibelelene nomntwana wakho. Thetha naye, dlala naye, kwaye umnike uthando. Mxelele ukuba unaye kuyo yonke inyathelo lendlela.

Kula maxesha anzima, kubalulekile ukucinga ngawe kwaye ukhathalele impilo yakho yengqondo. Ukuba uhlala uqinile, nomntwana wakho uya kuba namandla. Awuwedwa, sonke sikunye nawe.

I- Diffuse intrinsic pontine glioma, i-DIPG, umhlaza wobuchopho, umhlaza wobuntwana, i-pons, unyango lwemitha, ukhathalelo lwentlungu