Ua lohe paha ʻoe, a i ʻole ua lohe paha ʻoe mai kekahi o kou ʻohana a i ʻole hoaaloha, e pili ana i kahi maʻi ʻē loa a laha ʻole e hoʻopilikia wale ana i nā kānaka? I kekahi manawa, lōʻihi ka manawa e ʻike ai i ke ʻano o kēia maʻi. No laila, i kēia lā e kamaʻilio mākou e pili ana i kēlā mau maʻi laha ʻole . He mea nui loa ka ʻike e pili ana i kēia mau mea, no ka mea, ʻaʻole ʻoe i ʻike i ka wā e pono ai mākou i kēia ʻike.
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He aha ka maʻi laha ʻole?
I ka ʻōlelo maʻalahi, ʻo ka maʻi laha ʻole he maʻi e hoʻopilikia wale ana i kahi helu liʻiliʻi loa o ka poʻe o ke kaiāulu. I kēia manawa, e nānā, ma kahi ʻāina e like me ʻAmelika, ʻo kahi maʻi e hoʻopilikia ana i ka emi ma mua o ʻelua haneli tausani mau kānaka ua manaʻo ʻia he maʻi laha ʻole. Ma ʻEnelani, ʻo kahi maʻi e hoʻopilikia ana i ka emi ma mua o hoʻokahi i loko o 2,000 mau kānaka. Wahi a ka World Health Organization (WHO), ʻo nā maʻi e hoʻopilikia ana i ka emi ma mua o 65 mai loko mai o 100,000 mau kānaka e hāʻule ana i loko o kēia māhele. No laila, ʻike ʻoe, ʻokoʻa iki ka wehewehe ʻana o kēia mai kēlā ʻāina a i kēia ʻāina.
A hiki i kēia manawa, ua ʻike nā kānaka noiʻi ma mua o 7,000 o ia mau maʻi laha ʻole! E noʻonoʻo, ua hoʻopilikia kēia mau maʻi āpau ma mua o 300 miliona mau kānaka ma ka honua holoʻokoʻa, ʻo ka hapa nui o lākou he mau keiki ʻōpio. Aia kekahi poʻe me ia mau maʻi ma Sri Lanka, akā ʻaʻole i kamaʻilio nui ʻia.
E noʻonoʻo inā loaʻa iā ʻoe a i ʻole kekahi āu i ʻike ai kahi maʻi laha ʻole e like me kēia. Pehea ka paʻakikī o ia mea?
- Hiki ke hala nā makahiki e ʻike pono ai i ke ʻano o ka maʻi. I kekahi manawa, ʻoiai ma hope o ka hele ʻana i kekahi kauka ma hope o kekahi a me ka hana ʻana i hoʻokahi hoʻokolohua ma hope o kekahi, ʻaʻole hiki ke ʻike ʻia ka maʻi.
- Hiki ke like nā hōʻailona o kēia mau maʻi me nā maʻi maʻamau ʻē aʻe, no laila, ʻaʻole maopopo koke he maʻi laha ʻole kēia.
- Hiki i nā hōʻailona ke hoʻolilo i ka hana pono ʻana i ke ola o kēlā me kēia lā, paʻa i kahi hana, a hana paha i nā hana o ka hale. No kekahi poʻe, ʻo ka hele wale ʻana i ka lā he pilikia nui ia.
- ʻAʻohe lāʻau lapaʻau kūpono no nā maʻi laha ʻole he nui.
- ʻO ka noho ʻana me kahi maʻi e like me kēia hiki ke lilo i mea kaumaha kālā nui no nā ʻohana. Hiki ke paʻakikī ke uku i ke kumukūʻai o ka lāʻau lapaʻau a me ka mālama ʻana.
- Ua luhi nui ka noʻonoʻo a me ke kino o ka mea maʻi a me ka poʻe nāna e mālama iā ia.
Akā, ke holomua nei ka ʻepekema i kēlā me kēia lā. Ke hoʻāʻo mau nei nā kānaka ʻepekema e noiʻi ana i nā maʻi e like me kēia e ʻimi i nā kumu a hoʻomohala i nā lāʻau lapaʻau hou. No laila, mai hopohopo.
Aia kekahi ʻokoʻa ma waena o nā maʻi makua ʻole a me nā maʻi laha ʻole?
Hoʻohana ka poʻe he nui i nā huaʻōlelo "maʻi makua ʻole" a me "maʻi laha ʻole". Akā, aia kahi ʻokoʻa iki. ʻO nā maʻi makua ʻole nā maʻi i hana ʻole ʻia e nā mea noiʻi i ka noiʻi nui ʻana, a i ʻole (hiki i kēia ke komo pū me nā maʻi laha ʻole). ʻO kēia pinepine ma muli o ke kumukūʻai kiʻekiʻe o ka noiʻi.
Akā i kēia manawa ke loli iki nei ke kūlana. Ua hoʻomaka nā aupuni a me nā hui like ʻole a puni ka honua e hoʻokaʻawale kālā no ka noiʻi ʻana i nā "lāʻau lapaʻau makua ʻole" e ʻimi i nā lāʻau lapaʻau no ia mau "maʻi makua ʻole."
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Check Availability →He aha kekahi mau maʻi laha ʻole?
E like me kā mākou i ʻōlelo ai ma mua, he mau tausani o nā maʻi laha ʻole. Ua lohe paha ʻoe i kekahi o lākou. ʻAʻole i ʻike nui ʻia kekahi. Eia kekahi mau laʻana:
- ʻAcromegali
- ʻO ka maʻi Alice ma Wonderland
- ʻO ka sclerosis ʻaoʻao Amyotrophic (ALS)
- ʻAʻai anemia aplastic
- ʻO ka fibrosis cystic
- ʻO ka maʻi ʻiʻo Duchenne
- ʻO ka maʻi ʻo Ehlers-Danlos
- Maʻi Fabry
- Maʻi Gaucher
- Ka maʻi o Huntington
- Mesothelioma
- Maʻi mimi syrup maple
- Maʻi ʻeha o ke kelepona ʻokiʻoki
He mea ʻē paha kēia mau inoa, akā, he mau maʻi laha ʻole kēia e hoʻopilikia ai i nā kānaka.
He aha nā kumu o nā maʻi laha ʻole?
Hiki ke nui nā kumu no ka loaʻa ʻana o nā maʻi laha ʻole. ʻEkolu mau ʻano nui o nā kumu:
1. Genetics: ʻO nā loli i loko o nā genes ke kumu nui o nā maʻi laha ʻole. Hiki ke hoʻoilina ʻia kēia mau loli genetic mai kou mau mākua mai (germline mutation), a i ʻole hiki ke hana maʻamau i loko o kou kino me ka ʻole o kekahi lālā o ka ʻohana i loaʻa iā lākou (somatic mutation).
2. Nā huakini/Mikrobes: Hiki ke kakaikahi loa nā maʻi i hoʻokumu ʻia e kekahi mau mikrobes. No ka laʻana, he kakaikahi nā maʻi e like me ka maʻi puʻupuʻu ma kekahi mau ʻāina akā he mea maʻamau i nā ʻāina ʻē aʻe.
3. Nā mea ʻawahia: Hiki i kekahi mau kemika ke loaʻa ka hopena maikaʻi ʻole i ke kino a hoʻoulu i nā maʻi. No ka laʻana, ʻo ka ʻike ʻana i ka asbestos hiki ke hoʻoulu i ka mesothelioma, kahi maʻi ʻaʻai māmā kakaʻikahi.
Eia kekahi, aia paha nā kumu ʻē aʻe:
- ʻAʻole lawa ka loaʻa ʻana o kahi wikamina a mineral paha (Nutritional deficiency).
- Nā ulia pōpilikia (Nā ʻeha).
- Nā hopena i manaʻo ʻole ʻia i ka wā o ka mālama ʻana no kekahi maʻi ʻē aʻe.
I kekahi manawa, aia nā hihia kahi hiki ʻole ke loaʻa ke kumu no kēia mau maʻi laha ʻole.
He aha nā hōʻailona o kēia mau maʻi?
He ʻokoʻa loa nā hōʻailona o nā maʻi laha ʻole kekahi i kekahi. He ʻokoʻa ia mai kēlā maʻi a i kēia maʻi. E like me ka mea i ʻōlelo ʻia ma mua, i kekahi manawa ua like loa kēia mau hōʻailona me nā hōʻailona o nā maʻi maʻamau ʻē aʻe. He mea paʻakikī kēia ke ʻike pololei i ka maʻi. ʻAʻole paha e hōʻike kekahi poʻe i kekahi mau hōʻailona i nā pae mua.
Inā ʻoe e ʻeha ana ke kino, luhi mau, a ʻaʻole hiki iā ʻoe ke ʻike i ke kumu, e ʻike pono i ke kauka.
Pehea e ʻike ʻia ai nā maʻi laha ʻole?
He mea paʻakikī pinepine ka ʻike ʻana i kahi maʻi laha ʻole. Aia kekahi mau kumu no kēia:
- Nā hōʻailona like me nā maʻi ʻē aʻe.
- He nui nā maʻi i laha ʻole loa a ʻaʻole ʻike pinepine nā kauka iā lākou, e paʻakikī ai ka ʻike ʻana.
Hiki ke hala nā makahiki e ʻike pono ai i ka mea e hana nei i loko o kou kino. E nīnau nā kauka iā ʻoe e pili ana i kāu mau hōʻailona a hana i nā hoʻokolohua, e like me nā hoʻokolohua koko a me nā hoʻokolohua kiʻi, e ʻike hou aku. Hoʻomaopopo nā kauka he hiki ke hoʻoluhi a hoʻonāukiuki kēia kaʻina hana. E hana lākou i nā mea āpau e hiki ai iā lākou ke kōkua iā ʻoe e ʻike i ke kūlana, a i ʻole e kuhikuhi iā ʻoe i nā loea i loaʻa ka ʻike ma ia wahi.
Pehea ʻoe e ʻike ai inā loaʻa i kahi pēpē kēia mau maʻi?
Ma nā ʻāina e like me ʻAmelika, hana ʻia kēlā me kēia pēpē hānau hou i kahi moʻo o nā hoʻokolohua kūikawā i kapa ʻia ʻo "Newborn screenings." Hoʻohana ʻia kēia mau hoʻokolohua e ʻike i kekahi mau maʻi i ʻike ʻole ʻia i ka nānā mua ʻana, akā aia paha i loko o ka pēpē (e.g., maʻi sickle cell, cystic fibrosis). ʻO kēia mau "Newborn screenings" he ala koʻikoʻi loa ia e ʻike ai i nā maʻi laha ʻole i nā pēpē ʻōpio. Inā ʻike mua ʻia ka maʻi, hiki ke hoʻomaka koke ʻia ka lāʻau no ka pēpē. Hana ʻia kekahi o kēia mau hoʻokolohua ma Sri Lanka.
He aha nā lāʻau lapaʻau no nā maʻi laha ʻole?
Aia kekahi mau ʻano lapaʻau like ʻole no nā maʻi laha ʻole:
- Nā lāʻau lapaʻau
- Nā mea hoʻohui meaʻai a i ʻole nā hoʻololi i ka papaʻai
- Hoʻōla hana
- Kekahi mau kaʻina hana a i ʻole nā ʻoki kino
- Hoʻōla kino
- Ka hoʻohana ʻana i nā mea lapaʻau kūikawā
ʻOkoʻa nō hoʻi nā pahuhopu o ka mālama ʻana ma muli o ka maʻi:
- Ke ho'ōla piha ʻana i ka maʻi (he mea paʻakikī kēia ke hana pinepine).
- Ke pale ʻana i ka maʻi mai ka lilo ʻana i mea ʻino.
- Ke kāohi nei i nā hōʻailona.
ʻO ka mea kaumaha, ʻaʻohe lāʻau lapaʻau o nā maʻi laha ʻole he nui, akā ke hoʻomau nei nā kānaka noiʻi e ʻimi i nā lāʻau lapaʻau e hiki ke kōkua i nā miliona o ka poʻe.
Hiki iā ʻoe ke nīnau i kāu kauka e pili ana i nā lāʻau lapaʻau hoʻokolohua hou (nā hoʻokolohua lapaʻau) . He mau haʻawina i hoʻolālā pono ʻia kēia kahi e hoʻāʻo ai nā mea noiʻi i ka maikaʻi o ka hana ʻana o kekahi mau hoʻokolohua a me nā lāʻau lapaʻau. Ma ke komo ʻana i kekahi o kēia mau mea, hiki paha iā ʻoe ke loaʻa nā lāʻau lapaʻau hou loa a kūpono hoʻi no kou kūlana.
E makaʻala i kekahi "lāʻau lapaʻau" a "ho'ōla" paha āu e ʻike ai ma ka Pūnaewele. Inā ʻike ʻoe i kekahi, e hōʻike i kāu kauka. Hiki iā ia ke haʻi iā ʻoe inā kūpono ia iā ʻoe, inā he kōkua, a inā he hoʻonele wale ia i ke kālā a inā he mea ʻino ia iā ʻoe. ʻAʻole paha e kōkua iki kekahi mau mea, a hiki i kekahi ke hōʻeha iā ʻoe.
He aha ka mea e hiki mai ana no kekahi me kahi maʻi laha ʻole?
ʻO kou wā e hiki mai ana, a i ʻole nā mea e hiki mai ana, e hilinaʻi ʻia ana ma luna o kekahi mau mea:
- He aha kou kūlana olakino kūikawā ?
- Pehea ka wikiwiki o ka ʻike ʻia ʻana o ka maʻi .
- He aha nā lāʻau lapaʻau i loaʻa ?
- He aha nā pilikia olakino ʻē aʻe āu e loaʻa nei?
Hiki i kāu mau kauka ke haʻi hou aku iā ʻoe e pili ana i kēia mau mea. He nui ka poʻe me nā maʻi laha ʻole e ola hauʻoli a lōʻihi. ʻO ka mea pōʻino, hiki i kekahi mau maʻi laha ʻole ke hoʻopōkole i ke ola o ke kanaka.
E hoʻomanaʻo, he ʻokoʻa nā kānaka a pau. ʻOiai hiki iā ʻoe ke aʻo nui mai ke kamaʻilio ʻana me nā poʻe ʻē aʻe i loaʻa i ke kūlana like me ʻoe, ʻokoʻa paha kāu huakaʻi ponoʻī. Eia kekahi laʻana, mai hoʻonāwaliwali inā ʻaʻole i hana kahi lāʻau lapaʻau i hana no kekahi iā ʻoe. E hoʻomau kāu mau kauka i ka hana pū me ʻoe e ʻimi i nā koho maikaʻi loa nāu.
Hiki ke pale ʻia nā maʻi laha ʻole?
Ma muli o ka nui o nā maʻi laha ʻole i hoʻokumu ʻia e nā kumu hoʻoilina, ʻaʻohe mea hiki iā mākou ke hana e pale aku iā lākou. Inā loaʻa iā ʻoe a i ʻole kāu hoa kahi maʻi laha ʻole a ke hoʻolālā nei ʻoe e loaʻa kahi keiki, he mea kōkua paha ke ʻimi i ka ʻōlelo aʻoaʻo hoʻoilina . Hiki i ke kākāʻōlelo ke wehewehe i nā manawa kūpono e loaʻa ai i kāu pēpē ka maʻi.
Āhea ʻoe e pono ai e ʻike i kāu kauka?
Inā loaʻa iā ʻoe nā hōʻailona hou a inā loli kāu mau hōʻailona me ke kumu ʻole, e ʻike i ke kauka. Inā ua ʻike ʻoe i kekahi mau kauka a ʻaʻole hiki iā lākou ke loaʻa ke kumu, hiki iā ʻoe ke noi no kahi kuhikuhi i kahi kikowaena lapaʻau e loea ana i ka ʻike ʻana, ka mālama ʻana, a me ka noiʻi ʻana i nā maʻi laha ʻole.
Nā nīnau koʻikoʻi e nīnau aku i kāu kauka
Eia kekahi mau nīnau e kōkua iā ʻoe e aʻo hou aʻe ma hope o ka loaʻa ʻana o kahi hōʻailona:
- Pehea wau i komo ai i loko o kēia kūlana?
- He aha nā lāʻau lapaʻau e hiki iaʻu ke loaʻa? Pehea lākou e hana ʻia ai?
- He aha kāu e ʻōlelo ai no koʻu wā e hiki mai ana?
- Manaʻo paha ʻoe e komo i kahi hoʻokolohua lapaʻau no kahi lāʻau lapaʻau hou?
- He manaʻo maikaʻi anei ka hana ʻana i nā hoʻāʻo genetic no koʻu ʻohana pū kekahi?
- Hiki iā ʻoe ke hoʻohui iaʻu i nā hui kākoʻo maʻi e like me kēia?
Ma hea e loaʻa ai iaʻu ka ʻike a me ke kākoʻo?
Hiki ke mehameha loa ka noho ʻana me kahi maʻi laha ʻole i kekahi manawa. Hiki ke paʻakikī ke loaʻa nā mākua ʻē aʻe e hoʻomaopopo i kou kūlana, ʻoiai inā ua ʻike ʻia kāu keiki me ka maʻi. E kamaʻilio me kāu kauka e pili ana i ke ʻano e hiki ai iā ʻoe ke kūkulu i kahi pūnaewele o nā kānaka a me nā kumuwaiwai e hiki ai iā ʻoe a me kou ʻohana ke huli no ke kākoʻo. No ka laʻana, aia paha nā manawa kūpono e hui pū me nā hui kākoʻo maʻi ma ka pūnaewele a i ʻole nā hoʻokolohua lapaʻau.
Ma Sri Lanka, aia kekahi mau haukapila i nā kauka loea e kōkua ana i ka poʻe me nā maʻi laha ʻole. Eia kekahi, hāʻawi kekahi mau hui manawaleʻa i ke kākoʻo i kēlā mau maʻi a me ko lākou mau ʻohana. No laila e hana i kekahi noiʻi.
ʻO nā mea nui loa e pono ai mākou e hoʻomanaʻo
ʻAʻole maʻalahi ka noho ʻana me kahi maʻi laha ʻole, akā e hoʻomanaʻo ʻaʻole ʻoe hoʻokahi.
- E kiʻi i ka ʻike kūpono. E aʻo e pili ana i kou maʻi, kāna mau lāʻau lapaʻau, a me nā noiʻi hou loa.
- E hoʻopili me kahi hui lapaʻau maikaʻi. E ʻimi i nā kauka a me nā limahana mālama ola e hoʻomaopopo iā ʻoe a kākoʻo iā ʻoe.
- E hui pū me nā hui kākoʻo. ʻO ke kamaʻilio ʻana me nā poʻe i loaʻa nā ʻike like me ʻoe he kumu ikaika nui ia.
- Mai hoʻopau i ka manaʻolana. Ke holomua nei ka ʻepekema, a ke hiki mai nei nā lāʻau lapaʻau hou.
ʻAʻole nui kā mākou ʻike e pili ana i nā maʻi laha ʻole. Akā, ke ʻike nei nā kānaka noiʻi i nā mea hou i kēlā me kēia lā. No laila, e kū i kēia pilikia me ka wiwo ʻole. Mai poina aia kekahi e hiki ke kōkua iā ʻoe, kekahi e hoʻolohe iā ʻoe.
Nā Maʻi Kakaikahi, Nā Maʻi Keiki ʻOle, Nā Maʻi Hoʻoilina, Ka Hōʻoia Lapaʻau, Maʻi Mau, Kākoʻo Maʻi, Nā Hoʻokolohua Lapaʻau
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