Ua manaʻo paha ʻoe ua nalowale koke kou mana i kou kino, ua kūlou i ka wā e hele ana, a ua ʻōlelo palū paha? I kekahi manawa hele mai kēia mau mea a hele aku no kekahi manawa. Inā ua loaʻa iā ʻoe kēlā ʻike, he mea nui loa ia e makaʻala i kēia ʻano i kapa ʻia ʻo Episodic Ataxia , a mākou e kamaʻilio nei i kēia lā.
Ua ʻike anei ʻoe i ke ʻano o ka Episodic Ataxia?
I ka ʻōlelo maʻalahi, ʻo ka ataxia kahi kūlana i hoʻokumu ʻia e ka nāwaliwali o nā ʻāpana o ko kākou lolo e kaohi ana i ka neʻe ʻana, ke kaulike, a me ka ʻōlelo . E noʻonoʻo iā ia e like me kahi hewa i loko o ka ʻōnaehana kamepiula o ko kākou kino. Aia nā ʻano like ʻole o ka ataxia.
ʻO kekahi o kēlā mau ʻano ua kapa ʻia ʻo Episodic Ataxia, a i ʻole EA . E like me ka manaʻo o ka huaʻōlelo "episodic", he ʻano kēia e kū pinepine ana, a i ʻole i kekahi mau manawa wale nō . ʻO ia hoʻi, loaʻa iā ʻoe nā "episodes" a i ʻole nā manawa o ka manawa e loaʻa ai iā ʻoe kēia mau pilikia neʻe a me ke kaulike. Hoʻomaka a hoʻopau maopopo kēia mau wā. Akā i kekahi manawa aia paha nā hōʻailona liʻiliʻi ma waena o kēia mau "episodes."
Aia kekahi mau inoa ʻē aʻe no kēia?
ʻAe, kapa kekahi poʻe i kēia kūlana ʻo Episodic Ataxia Syndrome a i ʻole EA syndrome . ʻO kēlā me kēia ʻano, ʻo ia ke kūlana like.
Aia kekahi mau ʻano ʻē aʻe o ka ataxia?
Nui nā ʻano o ka ataxia. E hoʻoholo nā kauka i ke ʻano o ka ataxia āu e loaʻa nei ma muli o kāu mau hōʻailona a pehea i ulu ai ke ʻano.
- ʻO kekahi mau ʻano ataxia he "holomua." ʻO ia hoʻi, loaʻa mau nā hōʻailona a e ʻoi mālie ka ʻino i ka hala ʻana o ka manawa.
- He ʻano hoʻoilina kekahi, ʻo ia hoʻi, ua hoʻoilina ʻia mai nā mākua mai ma o nā ʻano hoʻoilina.
- ʻO kekahi poʻe i loaʻa a i ʻole i hoʻokumu ʻia e kekahi maʻi ʻē aʻe.
Hiki i kēia mau ʻano ataxia like ʻole ke hana i nā hōʻailona like ʻole, e like me nā pilikia ʻiʻo a me ka paʻakikī i ka moni ʻana .
ʻO wai ka mea hiki ke loaʻa i ka episodic ataxia? Pehea ka maʻamau?
ʻO ka maʻamau, hoʻokumu ʻia ka episodic ataxia e nā loli (nā hoʻololi) i kekahi mau genes i hoʻoilina ʻia mai nā mākua . Eia nō naʻe, i kekahi manawa hiki ke hana koke ʻia kēia mau hoʻololi gene, me ka ʻole o ka mōʻaukala ʻohana. Hiki ke ʻokoʻa ka makahiki e ʻike mua ʻia ai kēia mau hōʻailona mai kēlā kanaka a kēia kanaka.
He ʻano laha ʻole ka episodic ataxia. Wahi a nā loea, ua manaʻo ʻia e hoʻopilikia wale ia i hoʻokahi i loko o hoʻokahi haneli tausani kānaka . No laila, ʻaʻole ia he mea maʻamau loa.
Pehea ka hopena o ka episodic ataxia iā ʻoe? He aha nā hōʻailona?
Inā loaʻa iā ʻoe ka episodic ataxia, hiki iā ʻoe ke paʻakikī i ka hele wāwae, nalowale kou kaulike, a i ʻole nā pilikia neʻe ʻē aʻe e mau ana no kekahi mau minuke a i kekahi mau hola . Hiki ke hana ʻia kēia mau "episodes" i kēlā me kēia lā a i kekahi manawa paha.
E noʻonoʻo, ke hana nei ʻoe i kekahi hana, a i ʻole e hoʻomākaukau ana e hele i kahi. Ua manaʻo koke ʻoe ʻaʻole e hoʻolohe ana kou mau wāwae iā ʻoe, ke wili nei lākou i kou hele ʻana, me he mea lā ʻaʻole lākou e pā pono ana i ka lepo. Hiki i kēia ke lilo i mea ʻoluʻolu ʻole a weliweli hoʻi.
ʻO nā pilikia me ka neʻe ʻana a me ke kaulike nā hōʻailona nui o ka episodic ataxia. Manaʻo paha ʻoe e hāʻule ana ʻoe a hana paha me ka paʻa ʻole .
Ke kū mai kahi "episode", hiki ke ʻike ʻia nā hōʻailona ʻē aʻe:
- Pōniuniu : He manaʻo o ka wili ʻana.
- ʻEha poʻo : Hiki ke lilo i ʻeha poʻo maʻamau a i ʻole he ʻeha koʻikoʻi.
- ʻO Nystagmus : He ʻano kēia kahi e like ai nā maka me he mea lā e hula ana.
- ʻIke pālua : ʻIke ʻana i nā mea ʻelua i ka manawa hoʻokahi.
- Ka luaʻi a me ka luaʻi .
- Hemiplegia: I kekahi manawa, hiki ke hana i ka nāwaliwali ma kekahi ʻaoʻao o ke kino, e like me ka lima a me ka wāwae.
- Tinnitus: Ke lohe nei i nā leo like ʻole i loko o nā pepeiao.
- Ke ʻōlelo ʻana me ka ʻole o ka pololei (Dysarthria) : Paʻakikī i ka ʻōlelo ʻana me ka maopopo.
ʻAʻole like ke ʻano o kēia mau hōʻailona i nā kānaka a pau. Loaʻa paha i kekahi poʻe kekahi mau o kēia, a ʻo kekahi poʻe paha ma nā ʻano like ʻole.
He aha ke kumu o ka episodic ataxia?
Manaʻo nā kānaka noiʻi ʻo nā hoʻololi ʻana o nā gene ke kumu nui o ka episodic ataxia. Ua ʻike mua ʻia nā hoʻololi ʻana o nā gene e hoʻoulu ai i kekahi mau ʻano EA. Eia nō naʻe, ke hoʻomau nei ka noiʻi ʻana, no ka mea, he ʻano paʻakikī kēia.
Aia kekahi mau ʻano o ka Episodic Ataxia Syndrome?
ʻAe, aia i kēia manawa ʻewalu ʻano o nā maʻi ataxia episodic. Ua ʻike pū nā loea i nā hoʻololi genetic e pili ana i kekahi o kēia. ʻElua o nā ʻano nui:
- ʻO ka Episodic ataxia type 1 (EA1) : Hoʻokumu ʻia kēia e nā mutations i loko o ka gene KCNA1 . Hoʻomaka pinepine ke ʻano i ka wā kamaliʻi . ʻO nā hōʻailona e komo pū me ka ʻūlū ʻana o nā ʻiʻo a i ʻole ka ʻoʻoleʻa . I kekahi manawa, pili ʻo EA1 me ka maʻi epilepsy.
- ʻO ka ataxia episodic ʻano 2 (EA2) : Hoʻokumu ʻia kēia e nā mutations i loko o ka gene CACNA1A . ʻO kēia ke ʻano maʻamau o ka ataxia episodic. Nystagmus (neʻe maka)He hōʻailona maʻamau kēia. Hoʻomaka pinepine ia i ka wā kamaliʻi a i ʻole ka wā ʻōpio .
No nā poʻe me `EA1` a me `EA2`, hiki ke ʻike koke ʻia kēia mau "episodes" ma muli o kekahi mau ʻano a i ʻole nā kūlana. Kāhea mākou i kēia mau "triggers" . Nā Laʻana:
- Kaumaha naʻau : E like me ke kaumaha nui, ka huhū, a i ʻole ka hopohopo.
- Ke kaumaha kino : Nā kūlana e like me ka luhi nui a me ke kuni.
He mea kākaʻikahi loa kekahi ʻano o ka episodic ataxia?
ʻAe, ʻo kekahi o nā ʻano `EA` (e.g. `EA3`, `EA4`, `EA5`, `EA6`, `EA7`, `EA8` ) he mea kakaikahi loa ia a ua loaʻa wale iā lākou i nā loea i hoʻokahi a ʻelua paha ʻohana . ʻOiai ua ʻike ʻia nā genes e pili ana i kekahi o kēia mau ʻano, ke aʻo nei nā mea noiʻi i nā mea ʻē aʻe.
Pehea e ʻike ai nā kauka i ka episodic ataxia?
E hana mua kāu kauka i kahi hoʻokolokolo kino , e kamaʻilio me ʻoe e pili ana i kāu mau hōʻailona, a nīnau inā loaʻa i kekahi o kou ʻohana ka ataxia.
A laila hiki ke hoʻouna ʻia ʻoe i kahi neurologist hiki ke hana i nā hoʻokolohua hou aʻe e hōʻoia i ka hōʻoia o ka episodic ataxia.
He aha nā ʻano hoʻokolohua i hana ʻia no kēia?
Hiki i kāu kauka ke ʻōlelo aku i kekahi mau hoʻokolohua e nānā i ka hana o kou lolo a me kou ʻōnaehana nerve. Hiki i kēia mau mea ke komo pū me:
- Nānā CT
- Electromyogram (EMG) : Ke ana kēia i ka hana uila o nā ʻiʻo a me nā aʻalolo.
- ʻO ke kiʻi MRI `(MRI)`
Eia kekahi, hiki i kāu kauka ke ʻōlelo i ka hoʻāʻo genetic e nānā i nā hoʻololi genetic e pili ana me ka episodic ataxia.
Hiki ke ho'ōla ʻia ka episodic ataxia? He aha nā lāʻau lapaʻau i loaʻa?
ʻO ka mea pōʻino, ʻaʻole hiki ke ho'ōla loa ʻia ka episodic ataxia. Akā, mai hopohopo! Hiki i nā kauka ke kuhikuhi i nā ʻano lapaʻau like ʻole a me nā lāʻau lapaʻau e kōkua iā ʻoe e hoʻokele i kāu mau hōʻailona a ola i kahi ola hana a kūʻokoʻa .
Ma muli o kāu mau hōʻailona, hiki i nā kauka ke kuhikuhi i nā mea pale i ke kahawai nerve . Hiki i kēia mau lāʻau lapaʻau ke kōkua i ka kaohi a hōʻemi paha i nā hanana o ka ataxia.
Eia kekahi, aia nā lāʻau lapaʻau no nā hōʻailona kikoʻī, e like me ka nystagmus (neʻe ʻana o nā maka) a i ʻole nā hopu ʻana . Ke ʻimi nei nā kānaka noiʻi i nā lāʻau lapaʻau hou e hiki ke kōkua i ka poʻe me ka EA.
Eia kekahi, hiki i ka hoʻoikaika kino ke kōkua i ka hoʻoikaika ʻana i kou kino a hoʻomaikaʻi i nā mea e like me nā maʻi gait.
He hopena anei ka meaʻai a me ka mea inu i kēia maʻi?
kekahi mau meaʻai a me nā mea inu (e laʻa meHiki i nā mea inu caffeine (e like me nā mea i loaʻa ka caffeine) ke hoʻonui i ka pilikia o nā hanana ataxia. No laila, he manaʻo maikaʻi e kamaʻilio me kāu kauka e pili ana i kēia a ʻike i ka mea e pilikia ai iā ʻoe. Ke aʻo nei nā kānaka noiʻi pehea e hoʻopilikia ai kekahi mau meaʻai a me nā mea inu i ka EA.
He aha nā mea e makaʻala ai i ka wā e noho ana me ka episodic ataxia?
ʻO kāu kauka kou hoaaloha maikaʻi loa ma kēia huakaʻi. Ma keʻano laulā, he mea nui e makaʻala i kēia mau mea:
- E ʻai i ka meaʻai olakino.
- E hahai i nā ʻōlelo a kāu kauka e pili ana i ka hoʻoikaika kino .
- E hiamoe maikaʻi .
Aia kekahi ala e pale aku ai i kēia mai ka hana ʻana?
He maʻi hoʻoilina ka episodic ataxia. ʻAʻole ia he hewa o kekahi. Hiki iā ʻoe ke hoʻoilina i kēia mau hoʻololi gene a i ʻole hiki ke hana maʻamau. No laila, ʻaʻohe mea hiki iā ʻoe ke hana e hōʻemi i kou pilikia o ka loaʻa ʻana o ka EA a pale aku paha.
Pehea ka lōʻihi o kēia kūlana?
ʻO ka episodic ataxia he maʻi ia no ke ola holoʻokoʻa . Akā, mai hopohopo. Hiki i kāu kauka ke kōkua iā ʻoe e ola i kahi ola olakino. E kamaʻilio me ia e pili ana i ke ʻano o ka mālama ʻana i kāu mau hōʻailona a loaʻa ke kākoʻo āu e pono ai.
He aha ka manaʻolana no ka wā e hiki mai ana me kēia kūlana?
Ua like ke ola o ka poʻe me ka episodic ataxia me ko ka heluna kanaka maʻamau . ʻO ke ʻano kēia, ʻaʻole i emi ka ola ma muli o kēia ʻano.
I kekahi manawa, e nalowale paha nā hōʻailona o ka EA i kou wā ʻelemakule, akā, ʻaʻole kēia e hana i nā mea a pau.
Hiki i nā poʻe he nui me ka EA ke kāohi i ko lākou mau hōʻailona me ka lāʻau lapaʻau . Aʻo kekahi poʻe e ola me ka holomua me kā lākou mau hōʻailona ma o ka hoʻōla kino a me ke kākoʻo naʻau.
Pehea lā wau e mālama ai iaʻu iho? Ua manaʻo ʻia anei he kīnā ia?
E mālama i kāu mau manawa me kāu kauka i ka manawa kūpono . E hahai pono i kāna ʻōlelo aʻo e pili ana i ka ʻai a me ka hoʻoikaika kino. E haʻi koke i kāu kauka inā loaʻa iā ʻoe nā hōʻailona hou a inā paha e hoʻopilikia kahi hōʻailona e kū nei.
Inā pilikia nui kāu mau hōʻailona episodic ataxia iā ʻoe a hiki ʻole iā ʻoe ke hana i kekahi hana , hiki paha iā ʻoe ke noi no nā pono kīnā. Hiki iā ʻoe ke kamaʻilio me kāu kauka e ʻike inā kūpono kou kūlana a me nā hōʻailona.
Leka Lawe-Home mai ka Mea a Mākou i Kamaʻilio Nei
ʻAe, i kēia manawa ua ʻoi aku kou maopopo i ka mea a mākou i kamaʻilio ai, ʻo Episodic Ataxia (EA). E hoʻomanaʻo:
- He maʻi laha ʻole ka EA, he maʻi genetic e hoʻoulu ai i nā pilikia neʻe a me ke kaulike .
- ʻO nā hōʻailona nui o kēia ka paʻakikī i ka hele wāwae, ka nalowale o ke kaulike, ka poniuniu, a me ka paʻakikī i ka ʻōlelo ʻana.Nā mea like me ia.
- ʻOiai ʻaʻole hiki ke ho'ōla loa ʻia ka EA, hiki ke hoʻomalu maikaʻi ʻia nā hōʻailona a hiki ke alakaʻi ʻia ke ola maʻamau me ka lāʻau lapaʻau, ka lāʻau lapaʻau kino, a me nā loli o ke ʻano o ka nohona .
- ʻAʻole kēia he hewa o kekahi, he maʻi genetic ia .
- Inā loaʻa iā ʻoe kēia mau hōʻailona, mai kānalua e ʻike i ke kauka no ka ʻōlelo aʻo . He mea nui loa ka loaʻa ʻana o kahi hōʻailona kūpono a me ka lāʻau lapaʻau i ka wā hikiwawe loa.
- ʻO kāu kauka kou hoaaloha maikaʻi loa a me ke kākāʻōlelo ma kēia huakaʻi.
Inā ua ʻike ʻoe he mea pono kēia ʻike, ʻo ia ka mea nui loa. Ola maikaʻi i nā mea a pau!
ʻānaxia episodic, ʻānaxia, nā maʻi neʻe, ke kaulike, nā hoʻololi genetic, nā maʻi neurological, nā hōʻailona











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