Ua huikau iki paha ʻoe i kou lohe ʻana i ka inoa o kēia maʻi, me ka noʻonoʻo ʻana, "He aha kēia maʻi ʻē?" ʻO ka maʻi Creutzfeldt-Jakob, a i ʻole CJD (Creutzfeldt-Jakob Disease) e like me kā mākou e kapa nei no ka pōkole, he ʻano kakaikahi loa akā he koʻikoʻi loa ia e hōʻino ana i ka hana o ko mākou lolo . I ka ʻōlelo maʻalahi, ʻo ka mea e hana ʻia, ua luku mālie ʻia ko mākou mau hunaola lolo. Hiki i kēia ke hana i nā mea e like me ka nalowale o ka hoʻomanaʻo, ka huikau, a me nā loli o ke ʻano a me ka paʻakikī i ka hele wāwae.
He aha nā hōʻailona o CJD?
ʻAʻole ʻike ʻia nā hōʻailona o kēia maʻi i ka manawa hoʻokahi. Hoʻomohala mālie lākou. Hiki ke hoʻomaka liʻiliʻi a lilo i mea ʻino i ka hala ʻana o ka manawa. E nānā kākou i nā hōʻailona nui, mai ka mua a i ka ʻino loa:
- Nā pilikia poina a me ka hoʻomanaʻo: Hoʻomaka ia me ka poina ʻana i nā mea liʻiliʻi. Nā mea e like me kahi o kāu mau kī, ka inoa o kekahi. Akā, ʻoi aku kēia ma mua o ka poina maʻamau.
- Ka huikau a me ka pioloke: Paʻakikī i ka hoʻomanaʻo ʻana i nā mea e like me kou wahi a me ka manawa hea. Paʻakikī ke loaʻa i kou ala ʻoiai ma nā wahi maʻa mau.
- Nā loli i ke ʻano a me ke ʻano: ʻAʻole like me ma mua, hana ma waho o ke ʻano, huhū ma nā ʻano ʻē, a i ʻole e noho mālie koke . Ke hoʻāʻo nei e haʻalele i ka nohona.
- Nā pilikia ʻike a me ka paʻakikī e hoʻomaopopo i kāu mea e ʻike nei: I kekahi manawa ʻike pālua ʻoe, a ʻaʻole hiki iā ʻoe ke ʻike i kāu mea e ʻike nei.
- Nā hallucinations a i ʻole nā mea kuhihewa: ʻO ka ʻike ʻana a i ʻole ka lohe ʻana i nā mea i ʻike ʻole ʻia, a i ʻole ka manaʻo wahaheʻe e hoʻāʻo nei kekahi e hana ʻino iā ʻoe.
- Ka nalowale o ke kaulike a me nā pilikia hoʻonohonoho (ataxia): Manaʻo ʻaʻole hiki ke kaohi i ka wā e hele ai, e kuʻia ana, a e hāʻule ana. Paʻakikī ke kaohi ʻana i nā lālā.
- ʻO ka ʻūlū ʻana o nā ʻiʻo i kāohi ʻole ʻia (myoclonus) a me ka ʻoʻoleʻa o nā ʻiʻo (dystonia): Ka ʻūlū koke ʻana o nā ʻiʻo o ke kino, ka haʻalulu o nā lālā. I kekahi manawa e ʻoʻoleʻa nā ʻiʻo a wili i kahi ʻano ʻē.
- Nā hopu ʻana: Hiki ke hele mai me he mea lā he maʻi lā.
- Maʻi lolo: I ka hala ʻana o ka manawa, hiki i nā ʻāpana o ke kino ke lilo i maʻi lolo.
- Ka mae ʻana o nā ʻiʻo: Ka mae ʻana o nā ʻiʻo a wiwi ke kino.
ʻAʻole hiki mai kēia mau hōʻailona ma ke ʻano like a i ʻole ka wikiwiki like no nā kānaka a pau, akā inā ʻoe a i ʻole kekahi āu i ʻike ai e ʻike nei i kekahi o kēia mau hōʻailona, ʻoi aku ka maikaʻi o ka ʻike ʻana i ke kauka i ka wā hikiwawe loa.
No ke aha e hana ai ʻo CJD? He aha ke kumu?
Me he mea lā he mea paʻakikī iki kēia e hoʻomaopopo, akā e ʻae mai iaʻu e wehewehe maʻalahi. Loaʻa i ko mākou kino kahi ʻano protein i kapa ʻia he protein . Ua like kēia me nā mīkini liʻiliʻi e hana i kā lākou hana pākahi. I mea e hana pono ai kēia mau protein, pono lākou e "pelu" i loko o kahi ʻano kikoʻī. E noʻonoʻo iā ia e like me ka lau origami, inā pelu pono ʻoe, loaʻa iā ʻoe kahi ʻano nani.
No laila, i kekahi manawa pelu pono ʻole kēia mau protein. ʻAʻole hiki ke hoʻohana ʻia kahi protein i pelu pono ʻole ʻia e ko mākou mau hunaola lolo. Hoʻokumu ʻia ʻo CJD e kekahi o kēlā mau protein i pelu pono ʻole ʻia, ʻano ʻē. Ua kapa ʻia kēia mau mea he "prions."
Hoʻomaka kēia mau protein prion e hōʻiliʻili i loko o nā hunaola lolo. ʻOiai ʻaʻole hiki i nā hunaola ke wehe iā lākou, hōʻino mālie lākou i nā hunaola a make i ka hopena. ʻO ka mea weliweli loa, hiki i kēia mau prion ke hoʻopili hewa i nā protein maʻamau, e hoʻolilo iā lākou i prion. E like me ka maʻi lele, hoʻonui kēia mau prion a laha ma loko o ka lolo. ʻO ia ke kumu e lilo koke ai ka maʻi i mea koʻikoʻi.
E noʻonoʻo, ke hana nei kēia prion e like me ka ʻāpala pala e hōʻino ana i nā ʻāpala maikaʻi ʻē aʻe a pau.
Aia kekahi mau ʻano like ʻole o CJD?
ʻAe, aia kekahi mau ʻano nui o CJD. Ua hoʻokaʻawale ʻia kēia mau mea e like me ke ʻano o ko lākou ulu ʻana.
1. Sporadic CJD: ʻO kēia ke ʻano maʻamau. Hoʻomaka koke ia, me ke kumu ʻole. ʻAʻole ʻike ʻia ke kumu pololei.
2. Genetic CJD: Hana ʻia kēia ke hoʻoilina ʻia kahi gene ʻano ʻē mai kekahi a i ʻole nā mākua ʻelua. Aia ʻelua mau ʻano like ʻole o kēia: Gerstmann-Sträussler-Scheinker (GSS) syndrome a me Fatal Familial Insomnia . He mea kākaʻikahi loa kēia.
3. CJD i loaʻa: Hoʻokumu ʻia kēia e kahi kumu o waho. No ka laʻana, hiki ke hana ʻia e kahi hoʻoili kino , ka hoʻoili ʻiʻo , a i ʻole ka hoʻohana ʻana i nā mea hana ʻoki kino i hoʻomaʻemaʻe pono ʻole ʻia. Eia nō naʻe, he mea kakaikahi loa kēia i kēia mau lā, no ka mea, ua holomua nui ka ʻenehana lapaʻau.
4. Variant CJD (vCJD): Ua lohe paha ʻoe i kēia e pili ana i ka maʻi "Mad Cow Disease" a i ʻole Bovine Spongiform Encephalopathy (BSE) . Hiki iā ʻoe ke loaʻa iā vCJD ma ka ʻai ʻana i ka ʻiʻo mai ka bipi wahine me BSE. Hiki ke hoʻoili ʻia ka prion e hoʻoulu ai i ka BSE i nā kānaka. Eia nō naʻe, he mea kakaikahi loa kēia i kēia manawa ma ka honua, ma muli o nā hana palekana i lawe ʻia i ka mahi holoholona.
ʻO wai ka mea i loaʻa pinepine i ka CJD? He maʻi lele anei?
ʻO kaʻoiaʻiʻo, hiki i kekahi ke loaʻa iā CJD. I kekahi manawa hiki iā ʻoe ke loaʻa ka prion i loko o kou kino no nā makahiki me ka ʻole o ka hōʻike ʻana i kekahi mau hōʻailona. Akā i ka wā e ʻike ʻia ai nā hōʻailona, hiki i ka maʻi ke lilo koke i mea koʻikoʻi i ka wā e hōʻino ʻia ai ka lolo.
Hoʻopilikia pinepine kēia maʻi i nā kānaka ma waena o 50 a me 80 mau makahiki. Eia nō naʻe, hiki ke ʻike ʻia nā ʻano genetic o CJD i kekahi manawa i nā kānaka ma waena o 30 a me 50 mau makahiki.
I kēia manawa ke noʻonoʻo nei paha ʻoe inā he maʻi lele kēia. ʻAʻole hiki ke laha ke kanaka me CJD mai kekahi kanaka a i kekahi ma o ka launa pū ʻana, ka ʻūhā ʻana, a i ʻole ka kaʻana like ʻana i ka meaʻai. ʻAʻohe mea e hopohopo ai. ʻO ke ala wale nō e loaʻa ai ka CJD, e like me ka mea i ʻōlelo ʻia ma mua, ma o ka hoʻoili ʻana o kahi ʻōpū a i ʻole ka ʻiʻo mai kahi mea nona ka CJD, a i ʻole ma o nā inikini o kekahi mau hormones mai kahi mea nona ka CJD.
Ua ʻike ʻia ua laha ka Variant CJD (vCJD) ma o ke kahe koko ʻana , akā he mea kakaikahi loa nō hoʻi ia. He mea kakaikahi loa nō hoʻi ke ʻano o vCJD ma ka honua holoʻokoʻa.
Pehea e ʻike pololei ai nā kauka i ka CJD?
Inā manaʻo ʻoe he mau hōʻailona kou o CJD, ʻo ka mea mua a ke kauka e hana ai, ʻo ia ke hoʻolohe pono i kāu mau hōʻailona a hana i kahi hoʻokolohua kino a me ka neurological. I kekahi manawa e noi lākou iā ʻoe e hana i nā mea liʻiliʻi i hiki iā lākou ke loaʻa kahi manaʻo pehea e hana ai kou lolo.
No loko o kahi hui o nā maʻi i kapa ʻia ʻo Transmissible Spongiform Encephalopathy ʻo CJD. Loaʻa ka inoa mai ka ʻoiaʻiʻo ua like ka lolo i hōʻino ʻia e nā prions me kahi huʻahuʻa me nā lua ke nānā ʻia ma lalo o kahi microscope.
Ke holo nei nā kauka i kekahi mau hoʻokolohua hou aʻe e hōʻoia i ka CJD.
- ʻO ke kiʻi MRI (Magnetic Resonance Imaging): Lawe kēia i nā kiʻi kikoʻī o ka lolo a nānā i nā ʻano ʻē aʻe i loko o ka lolo.
- ʻO ke kī ʻana o ka iwi kuamoʻo a i ʻole ka puncture lumbar: Pili kēia i ka lawe ʻana i kahi hāpana o ka wai mai ke kaula kuamoʻo a hoʻāʻo iā ia no nā protein prion.
- Hoʻāʻo EEG (Electroencephalogram): Ke ana kēia i ka hana uila o ka lolo a nānā i nā ʻano maʻamau ʻole. Hiki ke ʻike ʻia kahi ʻano kikoʻī ma CJD.
Eia kekahi, hiki ke hana ʻia nā hoʻokolohua hou aʻe e hoʻoholo i nā kūlana ʻē aʻe i loaʻa nā hōʻailona like me CJD.
- Nā hoʻāʻo koko
- Hoʻāʻo hoʻoilina: Inā kānalua ʻia ka CJD hoʻoilina.
- Ka nānā ʻana i ka mimi
- Biopsy lolo: Hana kākaʻikahi ʻia kēia, inā ʻaʻole hiki i nā hoʻokolohua ʻē aʻe ke hōʻoia i ka maʻi, no ka mea, he hana ʻoki liʻiliʻi ia.
Aia kekahi lāʻau lapaʻau no CJD?
ʻO ka mea pōʻino, ʻaʻohe lāʻau lapaʻau no CJD i kēia manawa, ʻaʻohe lāʻau e hoʻōki i ka laha ʻana o ka maʻi, a i ʻole ʻaʻohe lāʻau e hoʻolohi iā ia . ʻO kēia ka ʻāpana kaumaha loa o kēia maʻi.
Eia nō naʻe, hiki ke hāʻawi ʻia ka mālama palliative e hōʻemi i ka ʻoluʻolu ʻole i hoʻokumu ʻia e nā hōʻailona a hāʻawi i kahi hōʻoluʻolu i ka mea maʻi. No ka laʻana, hiki ke hāʻawi ʻia nā lāʻau lapaʻau e kāohi i nā hopu ʻana, hoʻokele i nā loli o ke ʻano, a hōʻemi paha i nā spasms ʻiʻo i kāohi ʻole ʻia. Eia nō naʻe, ua kaupalena ʻia nā pono o kēia mau lāʻau lapaʻau.
No ka mea hiki ke ʻoi aku ka wikiwiki o kēia kūlana, he mea nui i ka mea maʻi a me ka ʻohana ke loaʻa i ka mālama kākoʻo. I nā pae hope o ka maʻi, kōkua nā lawelawe hospice i ka mea maʻi e noho ʻoluʻolu a kaʻawale mai ka ʻeha.
I kekahi manawa, inā kūpono ʻoe, hiki i kāu hui lapaʻau ke kuhikuhi iā ʻoe e komo i nā hoʻokolohua lapaʻau, kahi e aʻo ai i nā lāʻau lapaʻau hou.
He aha kāu e manaʻo ai inā loaʻa iā ʻoe ka CJD?
ʻOiai ʻaʻohe lāʻau lapaʻau no CJD, ʻaʻohe manaʻolana no ka maʻi. Ma hope o ka hoʻomaka ʻana o nā hōʻailona, e emi mālie ana ka hiki ke hana, hele, a kamaʻilio i ka hala ʻana o ka manawa.
No ka mea hiki ke loli koke nā loli, he mea nui e hana pū me kāu hui mālama ola e kūkākūkā i kāu mau makemake a me nā pono a hoʻoholo. ʻOiaʻiʻo, he manaʻo maikaʻi ia no kākou a pau, me ka nānā ʻole inā he maʻi ko kākou, e loaʻa kahi palapala e like me ke kuhikuhi mua . ʻO ke ʻano kēia inā ʻaʻole hiki iā ʻoe ke hōʻike i kou mau manaʻo, ua kākau ʻoe i ka mālama ola āu e makemake ai a me ka mea āu e makemake ʻole ai. He mea nui loa ia e hana i kēia i ka wā mua o kahi maʻi e laha wikiwiki ana e like me CJD.
Ma muli o ke koʻikoʻi o kēia maʻi, hiki ke kōkua nui iā ʻoe a me kāu poʻe aloha ke ʻimi i ka ʻōlelo aʻo mai kahi loea olakino noʻonoʻo . Hiki iā ia ke lilo i ikaika nui e hoʻololi ai i kēia mau loli a kūkulu i kou hilinaʻi.
He aha ka manaʻolana e ola ai kahi maʻi CJD?
Make ka hapa nui o nā maʻi CJD i loko o kekahi mau mahina a i ʻole hoʻokahi makahiki o ka ʻike ʻana. ʻO ka ʻokoʻa wale nō ka CJD genetic , kahi e hiki ai i nā kānaka ke ola mai hoʻokahi a ʻumi mau makahiki ma hope o ka hoʻomaka ʻana o nā hōʻailona.
Hiki i kāu kauka ke hāʻawi iā ʻoe i ka ʻike kikoʻī a hou e pili ana i kou kūlana. E hoʻomanaʻo, he mau ʻōlelo laulā nā helu helu, a ʻokoʻa kēlā me kēia kanaka.
Hiki ke pale ʻia ka CJD?
ʻAʻole hiki ke pale ʻia nā ʻano CJD he nui. ʻOi aku ka CJD sporadic, ka mea e kū koke mai ana, ʻaʻohe ala e pale aku ai.
ʻO ke ʻano hiki ke pale ʻia wale nō ʻo ia ka ʻano CJD (vCJD) . Hoʻokumu ʻia ia e ka ʻai ʻana i ka pipi i loaʻa i ka BSE ("maʻi pipi pupule"), a hiki ke pale ʻia.
ʻO ka hoʻāʻo holoholona e pale aku i nā pipi i loaʻa i ka BSE mai ke komo ʻana i ke kaulahao meaʻai. Eia nō naʻe, hiki i nā ʻiʻo i hoʻāʻo ʻole ʻia a hoʻomākaukau pono ʻole ʻia ke lilo i mea pilikia. No laila, ʻoi aku ka palekana o ka pale ʻana i ka ʻai ʻana i nā ʻiʻo i hoʻoponopono ʻole ʻia a hoʻāʻo ʻole ʻia, ʻoiai nā mea i loaʻa nā ʻāpana e like me ka lolo a me ka iwi iwi .
ʻO ka mea hope loa, nā mea e hoʻomanaʻo ai
Hiki i ka ʻike ʻana o CJD ke lilo i mea hoʻololi ola. Hiki iā ia ke manaʻo e like me ʻoe a me ke ao a puni ʻoe ua nalowale i ka ʻimo o ka maka. Hiki i kēlā ʻano loli ke paʻakikī iā ʻoe a me kāu poʻe aloha ke hoʻomanawanui.
Inā ʻaʻole ʻoe maopopo i ka mea e noʻonoʻo ai e pili ana i kēia a pehea e hoʻomau ai, eia kāu hui lapaʻau e kōkua. Hiki iā lākou ke kōkua iā ʻoe e hoʻolālā mua a hoʻomākaukau no ka mea e hiki mai ana. E hoʻomanaʻo wale ʻaʻole ʻoe hoʻokahi.
ʻO ka maʻi Creutzfeldt-Jakob, CJD, Prion, Maʻi lolo, Maʻi neurological, Poho hoʻomanaʻo, Dementia, BSE, Maʻi pipi pupule











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