Aia ka lolo o kāu keiki i ka pilikia? E kamaʻilio kākou e pili ana i ka medulloblastoma!

Ua lohe paha ʻoe i ka Medulloblastoma? ʻAʻole paha. He ʻano maʻi ʻaʻai lolo ia i ʻike nui ʻia i nā keiki ʻōpio, ʻoiai ka poʻe ma lalo o 16 makahiki. Akā, mai hopohopo, e akāka kākou e pili ana i kēia. No ka mea, he mea nui loa ka makaʻala i kēia maʻi.

No laila, he aha ka medulloblastoma?

I ka ʻōlelo maʻalahi, ʻo ka medulloblastoma kahi puʻupuʻu kanesa e ulu ana i loko o kāu ʻōnaehana nerve waena (CNS) , ʻo ia hoʻi kou lolo a me ke kaula spinal. Hoʻomaka pinepine ia ma ka ʻāpana o kou lolo i kapa ʻia ʻo ka cerebellum, aia ma ke kua o kou lolo. Ua ʻike anei ʻoe e kāohi ana kēia lolo liʻiliʻi i nā mea he nui i loko o kou kino, e like me ke kaulike, ka hele wāwae, a me ka neʻe ʻana i kou mau lima a me kou mau wāwae?

Hoʻopilikia pinepine kēia maʻi i nā keiki a me nā ʻōpio ma lalo o 16 makahiki. Eia nō naʻe, hiki ke loaʻa i nā pākeke, ʻoiai he kakaikahi. Inā loaʻa ia i nā pākeke, ʻike pinepine ʻia ma waena o 20 a me 45 mau makahiki.

He ʻano maʻi kanesa laha ʻole kēia. Eia nō naʻe, ʻo ia ke ʻano maʻamau o ka maʻi kanesa o ka lolo i nā keiki . Hoʻomaopopo pinepine ʻia i nā keiki ma waena o 5 a me 9 mau makahiki.

Ke ulu wikiwiki nei nā ʻōpū Medulloblastoma a hiki ke laha i nā ʻāpana ʻē aʻe o ka lolo a me ke kaula spinal ma o ka wai cerebrospinal - ka wai maopopo e hoʻopuni ana i ko mākou lolo a me ke kaula spinal.

He aha nā hōʻailona o kēia? Pehea ʻoe e ʻike ai?

Hiki ke ʻokoʻa nā hōʻailona o ka Medulloblastoma mai kēlā kanaka a kēia kanaka. Aia lākou i nā mea e like me kou makahiki, ka nui o ka puʻupuʻu, a me ka mamao o kona ulu ʻana. Hiki ke hana ʻia kekahi mau hōʻailona e ka wahi o ka puʻupuʻu a i ʻole ka piʻi ʻana o ke kaomi i loko o ke poʻo. He manaʻo maikaʻi e makaʻala i kēia mau mea:

• ʻEha poʻo pinepine: He ʻokoʻa paha kēia mai ka ʻeha poʻo maʻamau, a ʻoi aku paha ka koʻikoʻi i ke kakahiaka.
• Ka luaʻi a me ka luaʻi: ​​Hiki ke ʻike ʻia kēia ʻano ma ke kakahiaka.
• Nā pilikia kaulike: Manaʻo paʻa ʻole i ka wā e hele ana, ʻaʻole hiki ke kū pololei.
• Paʻakikī ke hele wāwae: ʻAʻole hiki ke kū pono ma kou mau wāwae, paʻakikī ke piʻi a iho i nā alapiʻi.
• Dizziness: ʻO ka manaʻo e wili ana nā mea a puni ʻoe.
• Nā loli o ka ʻike: Ka pohihihi koke o ka ʻike, ka ʻike pālua.
• Luhi: Manaʻo e like me ʻoe ʻaʻole ʻoe e luhi me ka nānā ʻole i ka nui o kāu hiamoe ʻana.
• ʻEha hope: I kekahi manawa, hiki ke loaʻa ka ʻeha hope inā pālahalaha ke kanesa i ke kaula spinal.
• ʻAʻole hiki ke kāohi i ka mimi a me ka ʻōpala:Inā paha ua loaʻa iā ʻoe ka mana maikaʻi ma mua, inā kū koke mai nā pilikia e like me kēia, pono ʻoe e hopohopo. I ke ʻano o nā keiki ʻōpio, hiki ke piʻi aʻe ka pinepine o nā 'ulia pōpilikia'.

Mai makaʻu i ka medulloblastoma no ka mea wale nō he hoʻokahi a ʻelua paha o kēia mau hōʻailona kou. Eia nō naʻe, inā he nui kēia mau hōʻailona i ka lālani, ʻoiai hoʻi i kahi keiki ʻōpiopio, he mea naʻauao ke ʻike i ke kauka no ka ʻōlelo aʻo.

No ke aha e ulu ai ka medulloblastoma? He aha nā kumu?

ʻAʻole maopopo loa i nā kauka ke kumu o ka medulloblastoma. Eia nō naʻe, ua ʻike ʻia e hiki i kekahi mau maʻi genetic ke hoʻonui i ka pilikia o ka loaʻa ʻana. ʻO ke ʻano kēia, hiki i kekahi mau loli genetic i hoʻoili ʻia ma o nā hanauna ke loaʻa kahi hopena.

Eia kekahi mau kūlana genetic e hoʻonui ai i ia pilikia:

• Nā hoʻololi ʻana o ka gene BRCA1: Ua lohe paha ʻoe i nā gene BRCA1 a me BRCA2. ʻO nā protein a lākou e hana ai ke kuleana no ka hoʻoponopono ʻana i kā mākou DNA ke hōʻino ʻia. ʻO ka poʻe i hoʻoilina i kekahi mau ʻano like ʻole o kēia mau genes e piʻi aʻe ka pilikia o ka loaʻa ʻana o kekahi mau ʻano maʻi kanesa.
• ʻO ka maʻi ʻaʻai cell basal Nevoid (NBCCS): Ua kapa ʻia hoʻi kēia ʻo 'Gorlin syndrome.' He maʻi hoʻoilina nō hoʻi kēia. ʻOi aku ka nui o ka pilikia o ka poʻe me kēia i ka loaʻa ʻana o nā maʻi ʻaʻai ʻili cell basal. Loaʻa iā lākou he 5% ka manawa e loaʻa ai ka medulloblastoma.
• ʻO ka maʻi Turcot: Hiki i nā poʻe me kēia kūlana ke hoʻomohala i kahi ʻōpū o ka ʻōnaehana waena, e like me ka medulloblastoma a i ʻole ka adenoma pituitary, me ke kanesa colon.
• ʻO ka maʻi Li-Fraumeni: ʻO ka poʻe me kēia kūlana he nui ka pilikia o ka hoʻomohala ʻana i nā sarcomas, ka maʻi umauma, nā ʻano maʻi ʻē aʻe o ka lolo (gliomas, choroid plexus carcinomas), ka maʻi ʻōpū adrenal, a me ka leukemia.

He paʻakikī loa kēia mau kūlana hoʻoilina. Inā makemake ʻoe e ʻike hou aʻe e pili ana i kēia, ʻoi aku ka maikaʻi o ke kamaʻilio ʻana me ke kauka.

Pehea e ʻike ai nā kauka i kēia?

Inā loaʻa iā ʻoe a i ʻole kāu keiki kekahi o nā hōʻailona i ʻōlelo ʻia ma luna, e kamaʻilio mua kāu kauka me ʻoe e pili ana i kāu mau hōʻailona a nānā i kāu mōʻaukala olakino ʻohana. A laila, inā kānalua lākou he medulloblastoma, e kauoha lākou i kekahi mau hoʻokolohua e hōʻoia i ka hōʻailona.

He aha nā hoʻokolohua e hana pinepine ʻia?

• Hoʻokolohua Neurological: Ma kēia, e nānā ke kauka i kou lohe, ʻike, hoʻonohonoho ʻana, a me nā reflexes. Hiki i kēia ke hāʻawi iā ʻoe i kahi manaʻo o ka ʻāpana o ka lolo i hoʻopilikia ʻia.
• Nā hoʻāʻo kiʻi:Hoʻokomo pū ʻia kēia me kahi scan MRI (Magnetic Resonance Imaging) a i ʻole kahi scan CT (Computed Tomography). Hiki i kēia mau scan ke ʻike maopopo inā he puʻupuʻu i loko o ka lolo, pehea kona nui, a me kona wahi.
• Biopsy: I kekahi manawa, pono nā kauka e lawe i kahi ʻāpana liʻiliʻi o ka ʻiʻo mai ka puʻupuʻu a hoʻouna aku i kahi pathologist, he kauka loea i ka nānā ʻana i nā ʻiʻo. Hana pinepine ʻia kahi biopsy inā ʻaʻole hiki ke hōʻoia ʻia ka hōʻailona me nā scans wale nō.
• ʻO ka Spinal tap (Lumbar Puncture): Ma kēia kaʻina hana, lawe ke kauka lapaʻau i kahi hāpana liʻiliʻi o ka wai cerebrospinal a nānā iā ia no nā hunaola kanesa. Hana pinepine ʻia kēia hoʻāʻo ma hope o ka wehe ʻia ʻana o ka puʻupuʻu a i ʻole ka hoʻomalu ʻia ʻana o ke kaomi i loko o ka lolo.

He aha nā lāʻau lapaʻau no Medulloblastoma?

Pili nā koho lapaʻau i nā kumu he nui, me kou makahiki, ke olakino holoʻokoʻa, a me ka nui o ka puʻupuʻu. I ka hapanui o nā hihia, ʻo ke ʻoki kino nui no ka medulloblastoma e wehe i ka puʻupuʻu. Hiki ke ukali ʻia e ka chemotherapy, radiation therapy, a i ʻole nā ​​​​mea ʻelua.

• ʻO ke ʻoki kino: Hana ʻia kēia ʻoki kino e kahi ʻoki kino neuro. Hiki i kēia ke hōʻemi i ke kaomi i loko o ka lolo a i ʻole e wehe loa i ka puʻupuʻu. Eia nō naʻe, i kekahi manawa inā aia ka puʻupuʻu i loko o ka lolo, ma nā wahi koʻikoʻi, hiki ke paʻakikī ke wehe loa.
• Lapaʻau radiation: Hoʻohana ʻia kēia lāʻau lapaʻau e luku i nā hunaola kanesa e koe paha ma hope o ke ʻoki ʻana. I kekahi manawa hāʻawi ʻia ia me ka hui pū ʻana me ka chemotherapy.
• Chemotherapy: Hāʻawi ʻia kēia lāʻau e ke kauka maʻi ʻōpū. Hiki ke hāʻawi ʻia kēia mau lāʻau lapaʻau ma hope o ke ʻoki kino, ma hope o ka radiation therapy, a i ʻole me ka radiation therapy. I kekahi mau hihia, hiki ke hāʻawi ʻia kahi hoʻoili cell stem ma hope o ka chemotherapy.

E hoʻomanaʻo, ua hoʻoholo ʻia kēia mau lāʻau lapaʻau a pau e kahi hui o nā kauka, a ua hana ʻia no kou kūlana kikoʻī.

ʻEhia ka lōʻihi e hoʻōla ai? (Manawa Hoʻōla)

ʻOkoʻa ka lōʻihi o ka mālama ʻana a me ka manawa hoʻōla mai kēlā kanaka a i kēia kanaka. Inā loaʻa iā ʻoe ke ʻoki lolo, maʻamau ma kahi o ʻehā a ʻewalu pule e hoʻōla ai . Inā loaʻa iā ʻoe ka chemotherapy a i ʻole ka radiation therapy, hiki ke hala i kekahi mau pule a i ʻole nā ​​mahina. Aia ia i ke ʻano o ka maʻi. No ka ʻike pono i ka lōʻihi o ka manawa e lawe ai iā ʻoe a i ʻole kāu keiki, ʻoi aku ka maikaʻi o ke kamaʻilio ʻana me kāu kauka.

Āhea wau e ʻike ai i ke kauka?

Inā loaʻa iā ʻoe a i ʻole kāu keiki kekahi o nā hōʻailona i helu ʻia ma luna (e like me ke poʻo ʻeha, ka nausea, ka huikau, nā loli o ka ʻike), e ʻike koke i ke kauka . Eia kekahi, inā e mālama ʻia nei ʻoe no ka medulloblastoma, e haʻi i kāu kauka e pili ana i nā hopena ʻaoʻao āu e ʻike nei. Hiki iā lākou ke kōkua i ka hoʻokele ʻana i kāu mau hōʻailona a hoʻemi i kou ʻoluʻolu ʻole.

He aha ka mea e hiki ai i kekahi me ka medulloblastoma ke manaʻo?

Aia kekahi hui lapaʻau nui e kōkua iā ʻoe i kēia kūlana. Eia kekahi o lākou:

• Nā kauka lapaʻau oncology
• Nā kauka ʻokiʻoki lolo
• Nā Kauka Pathology
• Nā mea hoʻōla kino
• Nā Kauka Lapaʻau Radiological
• Nā kauka lapaʻau oncology radiation
• Hiki ke hoʻokomo pū ʻia nā poʻe e like me nā 'Neuropsychologists'.

I hui pū, hana lākou i kahi hoʻolālā lapaʻau pilikino e kūpono i kāu mau pono.

Hiki ke ho'ōla ʻia ʻo Medulloblastoma?

ʻAe, i ka hapanui o nā hihia. ʻOiai ʻo ka medulloblastoma kahi maʻi e hiki ke laha ma loko o ka ʻōnaehana nerve, hiki ke ho'ōla ʻia nā kānaka he nui. ʻOi loa aku inā ʻaʻole i laha ka maʻi kanesa i nā ʻāpana ʻē aʻe o ka lolo a me ke kaula iwi kuamoʻo, kiʻekiʻe ka manawa e ola ai.

He aha ka wānana no kēia?

ʻOi aku ma mua o 80% ka nui o ke ola ʻana o ʻelima makahiki no ka medulloblastoma . ʻO ke ʻano kēia, ʻoi aku ma mua o 80% o ka poʻe i ʻike ʻia me ka medulloblastoma e ola mau ana ma hope o ʻelima mau makahiki. Hoʻokumu ʻia kēia mau helu helu ma nā hopena o ka poʻe i loaʻa i ka maʻi ma mua.

Akā e hoʻomanaʻo, ʻaʻole hiki i kēia mau helu ke haʻi pololei iā ʻoe i ka mea e hiki mai ana i kou kūlana. No ka ʻike pono ʻana i kou kūlana a me nā ʻano hoʻōla, ʻoi aku ka maikaʻi o ke kamaʻilio ʻana me kāu kauka.

Hiki i ka lohe ʻana e pili ana i kahi puʻupuʻu lolo ke hoʻoluhi kino, noʻonoʻo, a me ka naʻau. ʻOiai inā pili ia i kāu keiki, hiki ke hoʻoluhi. Eia nō naʻe, aia nā lāʻau lapaʻau kūpono, no laila aia ka manaʻolana . E nīnau i kāu kauka e pili ana i nā lāʻau lapaʻau hou, e like me nā hoʻokolohua lapaʻau. Eia kekahi, e kamaʻilio me kāu kauka e pili ana i nā kumuwaiwai a me nā hui kākoʻo e hiki ke kōkua iā ʻoe. I loko o kēia manawa paʻakikī, hiki ke lilo i kumu nui o ka ikaika a me ka hōʻoluʻolu ke noho a puni ka poʻe i ʻike i nā mea like me ʻoe.

I ka hōʻuluʻulu manaʻo, nā mea e hoʻomanaʻo ai

ʻAe, no laila e hoʻomanaʻo aku kākou iā ʻoe i kekahi o nā mea nui a mākou i kamaʻilio ai e pili ana i ka medulloblastoma:

• ʻO Medulloblastoma kahi maʻi ʻaʻai lolo e loaʻa pinepine ana i nā keiki., akā hiki nō hoʻi i nā pākeke ke loaʻa iā ia.
• E makaʻala i nā hōʻailona e like me ke poʻo ʻeha, ka luaʻi ʻana, a me ka nalowale o ke kaulike.
• ʻOiai ʻaʻole ʻike ʻia ke kumu kikoʻī , hiki i kekahi mau ʻano genetic ke hana i kekahi kuleana.
• Hoʻomaopopo ʻia ka maʻi ma o nā hoʻokolohua e like me MRI, CT scan, a me ka biopsy.
• Aia nā ʻano lapaʻau e like me ke ʻoki kino, chemotherapy, a me ka radiation therapy.
• Kiʻekiʻe ka manawa e ho'ōla ai , ʻoiai inā ʻike ʻia a mālama ʻia i ka wā mua.
• Inā loaʻa iā ʻoe kekahi mau hōʻailona , ​​mai makaʻu e ʻike i ke kauka .

Manaʻolana wau he kōkua kēia ʻike iā ʻoe. E hoʻomanaʻo, ʻaʻole ʻoe hoʻokahi. Inā he mau nīnau kāu, mai kānalua e kamaʻilio me ke kauka.

ʻO Medulloblastoma, maʻi ʻaʻai lolo, maʻi ʻaʻai kamaliʻi, ʻōnaehana nerve, nā hōʻailona maʻi ʻaʻai, ka mālama ʻana i ka maʻi ʻaʻai, nā maʻi genetic