Omwana wo alina ekizimba ku bwongo ekitali kya bulijjo nga kino? Ka twogere ku AT/RT (Atypical Teratoid/Rhabdoid Tumor) .

Ng’omuzadde, ekimu ku mawulire agasinga okukaluba n’okumenya omutima gw’oyinza okuwulira kwe kukimanya nti omwana wo alina kookolo. Kya bulijjo okuwulira ng’otya, okweraliikirira, n’ennaku ng’owulira ku kookolo atatera kulabika, ow’amaanyi nga AT/RT (atypical teratoid/rhabdoid tumor). Naye kikulu okujjukira nti si ggwe wekka mu lugendo luno oluzibu. Ttiimu y’abasawo b’omwana wo eri naawe buli ddaala ly’ogenda.

AT/RT (Ekizimba ekitali kya bulijjo ekya Teratoid/Rhabdoid Tumor) kye ki?

Mu ngeri ennyangu, AT/RT kika kya kookolo akula mangu nnyo era atandikira mu busimu obw’omu makkati (CNS). Enkola yaffe ey’obusimu obw’omu makkati ekolebwa obwongo n’omugongo. Obutoffaali buno obwa kookolo butandikira mu bwongo oba mu mugongo. Mu bantu nga kimu kya kubiri abalina AT/RT, kitandikira mu bwongo oba mu kikolo ky’obwongo. Embeera eno esinga kukwata baana bato.

Obubonero buyinza okulabika mu bwangu. Mu kusooka oyinza okulowooza nti omwana wo alina obulwadde obutonotono, ng’omusujja ogw’enjawulo. Naye obubonero buno tebuggwaawo ng’obudde buyise oba ng’ojjanjabiddwa buli kiseera. Wano omusawo w’anaalagira okukeberebwa okuzuula ekituufu ekikyamu ku mwana wo. AT/RT bw’emala okuzuulibwa, omusawo wo ajja kwogera naawe ku bujjanjabi obusinga obulungi ku mbeera y’omwana wo.

Mu butuufu, ebiva mu kookolo ow’ekika kino ebiseera ebisinga tebiba birungi nnyo. Kubanga busaasaana mangu nnyo, ate oluusi kiba kizibu okubuggyawo ddala. N’olwekyo, obulamu bw’omwana buyinza okukendeezebwa. Kyokka, si buli muntu nti alina ekivaamu ekibi. Abanoonyereza bulijjo bagezaako okunoonya obujjanjabi obupya okwongera ku mikisa gy’okutaasa abaana.

Kya bulijjo okuwulira ebibuuzo bingi n’obutali bukakafu ng’ozuuliddwa nti olina kookolo naddala kookolo atatera kulabika nga AT/RT. Naye jjukira nti ttiimu y’abasawo y’omwana wo eri naawe mu lugendo luno lwonna. Waliwo obuwagizi bungi eri ab’omu maka n’abalabirira.

AT/RT ye kika ki ekya kookolo?

AT/RT kika kya kookolo w’obwongo atatera kulabika nnyo ng’akosa enkola y’obusimu obw’omu makkati (CNS), kwe kugamba, obwongo n’omugongo.

Kino tekitera kubaawo kitya?

Okunoonyereza okwakolebwa mu Amerika kwazuula nti abantu 470 bokka be babeera n’obulwadde bwa AT/RT. Ekyo kitegeeza nti abantu nga 73 bokka be bazuulibwa n’obulwadde buno buli mwaka. Ekyewuunyisa, ku bantu abo 73, 4 bokka be bakulu. Kale oyinza okulowooza ku ngeri gye kisinga okukosa abaana abato, n’engeri gye tekitera kubaawo.

Bubonero ki obulaga AT/RT?

Obubonero bwa AT/RT busobola okwawukana okusinziira ku muntu. Bisinziira ku bintu ng’emyaka gy’omwana n’ekifo ekizimba we kiri. Kyokka obubonero buno busobola okulabika mu bwangu ne bufuuka obw’amaanyi amangu:

• Okulumizibwa omutwe:Kino kitera nnyo naddala ku makya. Oluusi kikka oluvannyuma lw’okusesema.
• Okuziyira n’okusiiyibwa: Okuziyira n’okusiiyibwa emirundi mingi.
• Obukoowu: Omwana awulira ng’akooye buli kiseera.
• Enkyukakyuka mu ddaala ly’emirimu: Obutadduka na kuzannya nga edda, okuwulira ng’okooye.
• Okukaluubirirwa okutambula, okukuuma bbalansi, n’okukwatagana: Kiwulira ng’otali mu bbalansi ng’otambula, era kizibu okukwata ebintu.

Teebereza, okumala ennaku ntono kati, omwana wo omuto abadde azuukuka ku makya ng'agamba nti, "Maama, omutwe gunnuma," oba okusuula. Mugayaavu nnyo tasobola kukola mirimu gya ssomero, era alabika yeebase buli kiseera. Singa omwana wo eyali adduka n’azannya, kati agezaako okusigala mu kifo kimu, ekyo nakyo kiyinza okuba akabonero k’ekintu nga kino.

Mu baana abato, ekizimba kino kiyinza okuleetera omutwe okulabika nga munene katono. Kyokka, mu baana abakulu, kiyinza obutalabika nga bwe kiri.

Kiki ekivaako AT/RT?

Ekisinga okuvaako AT/RT y’enkyukakyuka mu emu ku buzaale bubiri, oba SMARCB1 oba SMARCA4. Bino biyitibwa "obuzaale obuziyiza ebizimba." Mu ngeri ennyangu, obuzaale buno bukola puloteyina efuga sipiidi n’obunene bw’obutoffaali mu mubiri gwaffe. Kale, singa wabaawo enkyukakyuka oba ekikyamu mu buzaale buno, obutoffaali butandika okukula amangu era nga tebufugibwa. Eyo y’ensonga lwaki ebizimba bino bikola.

Kino kintu kya buzaale?

Yee, emisango egimu egya AT/RT giyinza okuba egy’obuzaale. Kino kitegeeza nti enkyukakyuka y’obuwuka obuleeta kookolo ono esobola okusikira abazadde okutuuka ku mwana. Kyokka, emirundi egisinga, si kya nsikirano. Kino kitegeeza nti enkyukakyuka eno esobola okubaawo oluusi n’oluusi mu mwana, ne bwe kiba nti tewali muntu yenna mu maka yali afunye embeera eno.

Ani asinga okubeera mu kabi?

AT/RT esinga kukwata baana abali wansi w’emyaka 3. Wabula kikulu okujjukira nti esobola okukula mu baana ab’emyaka gyonna, oba mu bantu abakulu.

AT/RT ezuulibwa etya?

Omusawo azuula AT/RT ng’akola okukebera omubiri, okukebera obusimu, n’okukeberebwa okulala okutonotono okw’enjawulo. Mu kukebera kuno okusooka, omusawo ajja kukubuuza ku bubonero bw’omwana wo, ebyafaayo by’obujjanjabi eby’emabega, n’okumanya oba waliwo omuntu yenna mu maka go eyabadde n’embeera eno.

Okugatta ku ekyo, ebigezo ebikolebwa bye bino:

• MRI (Magnetic Resonance Imaging) scan: Kino kisobola okukuba ebifaananyi ebikwata ku bwongo n’omugongo mu bujjuvu. Kino kiyinza okuyamba okuzuula ekifo ekituufu ekizimba we kiri n’obunene.
• Okuboola omugongo: Kino kizingiramu okutwala akatundu akatono ku mazzi ageetoolodde omugongo (amazzi g’omugongo) n’ogakebera okulaba oba obutoffaali bwa kookolo busaasaanidde.
• Okukebera obuzaale:Okukebera kuno kukolebwa okulaba oba waliwo enkyukakyuka yonna mu buzaale bwa SMARCB1 oba SMARCA4 obwogeddwako emabegako.
• Biopsy: Kino kizingiramu okutwala akatundu akatono ku kizimba n’akakebera mu microscope okukakasa ekika kya kookolo.

Bujjanjabi ki obuweebwa AT/RT?

Omusawo w’omwana wo ayinza okukuwa amagezi gano wammanga ng’obujjanjabi bwa AT/RT:

Okulongoosebwa okuggyamu ekizimba

Omusawo alongoosa obusimu ajja kuggyawo ekizimba nga bwe kisoboka ng’alongooseddwa. Kyokka era kiyinza okwetaagisa okukozesa eddagala eriweweeza ku bulwadde bwa kookolo n’okukozesa eddagala eriyitibwa radiation therapy okusaanyaawo obutoffaali bwa kookolo bwonna obusigaddewo oluvannyuma lw’okulongoosebwa.

Obujjanjabi bw’eddagala

Kino kika kya ddagala eritta obutoffaali bwa kookolo oba okubulemesa okwawukana. Oluusi eddagala lino liweebwa mu kamwa oba ng’empiso mu musuwa oba mu binywa (systemic chemotherapy). Engeri endala kwe kufuyira eddagala butereevu mu mazzi ageetoolodde omugongo (intrathecal chemotherapy).

Obujjanjabi bw’amasannyalaze (Radiation Therapy).

Kino kikozesa X-ray ez’amaanyi amangi okutta obutoffaali bwa kookolo oba okubulemesa okukula. Ekyuma kilungamya emisinde gino egy’obusannyalazo mu butuufu okutuuka ku kizimba. Abaana abali wansi w’emyaka 3 baweebwa obujjanjabi obw’amasannyalaze (radiation therapy) ku ddoozi entono ennyo kubanga buyinza okukosa enkula yaabwe n’enkula yaabwe.

Okusimbuliza Obutoffaali bw’Ensigo

Oluvannyuma lw’okuweebwa eddagala ery’amaanyi, balongoosa obutoffaali obusibuka mu mubiri okudda mu kifo ky’obutoffaali obubula okuva mu mubiri gw’omwana. Nga tebannatandika kujjanjaba ddagala, abasawo baggya obutoffaali obumu ku mwana ne babutereka. Olwo, obujjanjabi bw’eddagala bwe buggwa, obutoffaali buddizibwa mu mwana nga buyita mu musuwa (mu misuwa).

Obujjanjabi obugendereddwamu

Buno bujjanjabi bupya eri AT/RT nga mu kiseera kino buli mu kugezesebwa mu malwaliro. Mu kino, eddagala erimu likola nga liziyiza ebintu ebimu ebiyamba obutoffaali bwa kookolo okukula n’okwawukana.

Obujjanjabi bw’abaserikale b’omubiri

Buno era bujjanjabi mu kiseera kino obugezesebwa mu malwaliro ku AT/RT. Kikola nga kiyamba abaserikale b’omubiri gw’omwana yennyini okulwanyisa kookolo.

Obujjanjabi obw’okukkakkanya obulumi

Kino kikolebwa okukendeeza ku bubonero bw’omwana, okukendeeza ku bulumi, okumuwa obuweerero, n’okutumbula omutindo gw’obulamu bwe.

Ekikulu: Omusawo ajja kukola ebigezo bino byonna era asalewo obujjanjabi obusinga omwana wo. Oluusi obujjanjabi obusukka mu bumu buyinza okuweebwa. Kikulu okugenda mu maaso n’okubeera wansi w’obulabirizi bw’abasawo n’okukeberebwa ng’omaze okujjanjabibwa. Eno y’engeri gy’osobola okulaba oba obujjanjabi buno butuuse bulungi era oba kookolo akomyewo.

Ani ali ku ttiimu y’abasawo omwana wo?

Oyinza okulaba abasawo ab’enjawulo n’abakola ku by’obulamu ng’ojjanjaba AT/RT. Ttiimu y’abasawo y’omwana wo eyinza okuli:

• Abasawo b’abaana oba abasawo b’amaka (Abasawo abasookerwako) .
• Abasawo abalongoosa obusimu
• Abakugu mu by’obulwadde bwa kkansa (radiation oncologists).
• Abakugu mu by’obusimu
• Ababuulirira ku by’obuzaale

Waliwo ebizibu byonna ebiva mu bujjanjabi buno?

Yee, ebizibu ebivaamu bisobola okubaawo n’obujjanjabi bwonna obwa AT/RT. Omusawo w’omwana wo ajja kukunnyonnyola ebizibu bino n’ebyo by’olina okwegendereza ng’ojjanjabibwa. Ebizibu ebimu biyinza okubaawo amangu ago, ate ebirala biyinza obutalabika okutuusa nga wayise emyezi. Bw’oba ​​olina ekibuuzo kyonna, tolwawo kubuuza musawo wo.

Entunula/Enteebereza ya AT/RT eri etya?

AT/RT kika kya kookolo ekikambwe ennyo, asaasaana amangu, era singa obujjanjabi tebuwonyezebwa ddala, obulamu bw’omwana buyinza okuggwaawo amangu. Kyokka kino kyawukana nnyo okusinziira ku muntu. Ng’ekyokulabirako, singa ekizimba kisobola okuggyibwawo ddala ng’olongooseddwa, wabaawo omukisa okuwona.

Endowooza esalibwawo ensonga eziwerako:

• Emyaka gy'omwana wo.
• Obusika bw’obuzaale.
• Ekizimba kiyinza kitya okuggyibwamu nga kiyita mu kulongoosebwa?
• Oba kookolo asaasaanidde mu bitundu by’omubiri ebirala.

Omusawo wo yekka y’asobola okukuwa amawulire agasinga obutuufu agakwata ku nteekateeka y’omwana wo. Bw’oba ​​olina ekibuuzo kyonna, yogerako ne ttiimu y’abasawo y’omwana wo.

Omuwendo gw’okuwangaala n’okuwona AT/RT guli gutya?

Olw’okuba AT/RT kika kya kookolo ekitali kya bulijjo nnyo, tewali biwandiiko bimala kuteebereza bulungi miwendo gy’okuwangaala n’okuwona embeera eno. Omusawo w’omwana wo ajja kusobola okukuwa amawulire agasinga okuba ag’omulembe agakwata ku mbeera y’omwana wo.

AT/RT esobola okuziyizibwa?

Ebyembi, mu kiseera kino tewali ngeri yonna gye tuyinza kuziyiza AT/RT. Bw’oba ​​olina essuubi ly’okuzaala omwana omulala, kiyinza okuba ekirungi okwogera n’omubuulirizi ku buzaale okumanya oba ggwe oba munno mulina enkyukakyuka mu buzaale eyinza okuleeta AT/RT n’akabi akali mu mwana wo okugisikira.

Bibuuzo ki by’osaanidde okubuuza omusawo w’omwana wo?

Kya bulijjo okuba n’ebibuuzo bingi mu birowoozo byo oluvannyuma lw’okuyiga ku AT/RT. Kakasa nti obuuza omusawo w’omwana wo ebibuuzo bino:

• Ekizimba ku mubiri gw'omwana wange kiri ludda wa?
• Bujjanjabi bwa ngeri ki gy’oteesa?
• Waliwo ebizibu byonna ebiva mu bujjanjabi buno?
• Obujjanjabi buno bunaakwata ku nkula y’omwana wange n’enkula ye?
• Omwana wange agenda kuteebereza ki?

N’ekisembayo, ekisinga obukulu (Obubaka bw’okutwala awaka) .

"Omwana wo alina kookolo." Bino bye bimu ku bigambo ebizibu omuzadde by’ayinza okuwulira. Oyinza okuba nga weeraliikirira ekiddako, ku biseera by’omwana wo eby’omu maaso. Wadde nga waliwo ebintu bingi ebitali bikakafu ebijja ne kookolo, jjukira nti ttiimu y’abasawo y’omwana wo eri naawe buli ddaala ly’ogenda. Zijja kukuyamba okutambulira mu bujjanjabi, okuddukanya obubonero, n’okulabirira omwana wo obulamu bwe bwonna. Okunoonyereza kugenda mu maaso okuyiga ebisingawo ku AT/RT (atypical teratoid/rhabdoid tumor) n’okunoonya engeri empya ez’okugijjanjaba. N’olwekyo, tolekangayo ssuubi.

` AT/RT, kookolo w’obwongo, kookolo w’abaana, obubonero bwa kookolo, obujjanjabi bwa kookolo, enkyukakyuka mu buzaale, enkola y’obusimu