ʻO ka loaʻa ʻana o ke kauka kūpono iā ʻoe a me ka mea e hoʻomaopopo iā ʻoe i kekahi manawa he mea paʻakikī iki. He ʻokoʻa kākou a pau, me nā pono a me nā makemake like ʻole. No laila, inā loaʻa iā ʻoe kahi maʻi laha ʻole e like me ka hATTR Amyloidosis , e ʻike paha ʻoe he mea paʻakikī loa ia. I ka mālama ʻana i kahi maʻi e like me kēia, he mea nui e loaʻa i ke kauka i ʻike maikaʻi i ka maʻi a nāna e hāʻawi iā ʻoe i ka pae o ka mālama āu e pono ai. ʻO ka ʻoiaʻiʻo, no ka loaʻa ʻana o ka lāʻau lapaʻau maikaʻi loa, pono ʻoe e ʻimi i kekahi mau loea ma nā ʻano like ʻole.
He aha ke ʻano o nā kauka e mālama nei iā hATTR?
I ka ʻōlelo maʻalahi, he maʻi laha ʻole ka hATTR amyloidosis e hiki ke hoʻopilikia i nā ʻōkana he nui i loko o kou kino i ka manawa like. ʻO ia hoʻi, ʻaʻole hiki iā ʻoe ke loaʻa ka lāʻau lapaʻau mai hoʻokahi loea wale nō. Pono ʻoe i ke kākoʻo o kahi hui multidisciplinary.
Eia kekahi laʻana, inā ua pilikia kou puʻuwai i kēia maʻi, pono ʻoe e ʻike i kahi kauka puʻuwai. Ma ka ʻaoʻao ʻē aʻe, inā he pilikia neurological kou, e like me ka numbness a i ʻole ka nāwaliwali i kou mau wāwae, pono ʻoe e ʻike i kahi neurologist. No laila, ʻo nā hōʻailona āu e ʻike nei, nā kino i hoʻopilikia ʻia, a me ka nui o ka pōʻino i hana ʻia e ka maʻi e hoʻoholo ai i nā loea āu e ʻike ai.
Ma ka papa ma lalo nei, e ʻike mākou i nā loea i makemake nui ʻia no ka maʻi hATTR a me nā ʻano hōʻailona a lākou e mālama ai.
| Kahua lapaʻau kūikawā | Nā hōʻailona/kūlana maʻamau a lākou e mālama ai |
|---|---|
| Kauka Puʻuwai | Ka nāwaliwali o ka hana o ka puʻuwai (Cardiomyopathy), nā ʻano ʻē o ka puʻuwai, nā pilikia hanu. |
| Kauka lapaʻau noʻonoʻo | ʻO ka maneʻo, ke ʻūlū, ka ʻeha, a me ka nalowale o ka ʻike ma nā lālā (Peripheral Neuropathy). |
| Kauka ʻōpū | ʻEha ʻōpū, maʻi kahe, paʻa ʻōpū, pohō kaumaha, nausea. |
| Kauka Nephrologist | Ke hoʻopilikia ʻia nā puʻupaʻa (e.g. protein i loko o ka mimi). |
| Kauka maka | Ke hoʻopilikia ʻia nā maka (e.g. piʻi ka kaomi o ka maka, ʻike maka pōwehiwehi). |
| Kākā'ōlelo Hoʻoilina | Ma muli o ka maʻi hoʻoilina kēia, pono e aʻo ʻia nā ʻohana e pili ana i ka pilikia a me ka hoʻāʻo ʻana i nā hoʻoilina. |
Hiki i kāu mau hōʻailona ke hilinaʻi i ka mutation kikoʻī i loko o ka gene Transthyretin (TTR) e hoʻoulu ai i ka maʻi. E hoʻoholo kēia i ke ʻano o nā kauka āu e pono ai. Pono paha ʻoe e ʻike i nā loea ʻē aʻe inā loaʻa nā hōʻailona hou i ka hala ʻana o ka manawa i ka holomua ʻana o ka maʻi.
Pehea e loaʻa ai kahi loea hATTR ma Sri Lanka?
I ka mālama ʻana i kahi maʻi laha ʻole e like me kēia, he mea nui loa ka loaʻa ʻana o ka mālama kūikawā. Ma Sri Lanka, ʻo ke ala maikaʻi loa e hana ai i kēia, ʻo ia ke hele i kahi haukapila nui kahi e hana ai kekahi mau loea ma kahi hoʻokahi.
ʻO ka maʻamau, ma nā haukapila aupuni nui e like me nā Halemai Kumu a me ka Halemai Lahui o Sri Lanka, hui pū nā loea ma nā ʻano like ʻole e mālama i nā maʻi. Loaʻa paha kēia pono i kekahi mau haukapila pilikino nui.
ʻO kāu hana mua ma kēia huakaʻi, ʻo ia ke ʻike i kāu kauka ʻohana (GP). Hiki iā ia ke kuhikuhi iā ʻoe i ke kauka loea kūpono loa a i ʻole kahi haukapila me kahi hui o nā loea, ma muli o kāu mau hōʻailona.
ʻO ka pōmaikaʻi o ka loaʻa ʻana o ka mālama ʻana ma kahi kikowaena e like me kēia, ʻo ia kāu āpauʻO ka loaʻa ʻana o nā moʻolelo lapaʻau ma kahi hoʻokahi, hiki i nā kauka ke kūkākūkā maʻalahi i kou kūlana me kekahi a hoʻomohala i ka hoʻolālā lapaʻau maikaʻi loa. Hiki iā ʻoe ke aʻo e pili ana i nā lāʻau lapaʻau hou a i ʻole nā hoʻokolohua lapaʻau.
E pono hou anei iaʻu ke kauka ʻohana?
ʻAe, ʻoiaʻiʻo nō. ʻOiai inā loaʻa iā ʻoe ka hATTR, he mea nui loa kāu kauka mālama mua. ʻO ia ke kikowaena o kou olakino. He mea nui loa ka loaʻa ʻana o ke kamaʻilio maikaʻi ma waena o kāu hui o nā loea a me kāu kauka ʻohana . Mai poina e hoʻomaopopo i kāu kauka ʻohana e pili ana i nā mea āpau āu i ʻike ai, i mālama ʻia, i hoʻāʻo ʻia, a pēlā aku. Eia kekahi, e hāʻawi i nā kope o kāu mau hōʻike loea i kāu kauka ʻohana.
Pehea e hoʻonohonoho ai au i kaʻu lāʻau lapaʻau me nā kauka he nui?
ʻOiai paha he mea paʻakikī kēia, he mea maʻalahi loa ia inā ʻoe e hoʻolālā mua.
- E mālama i kāu faila ponoʻī: E mālama i kāu mau hōʻike hoʻāʻo a pau, nā lāʻau lapaʻau, a me nā kuhikuhi i loko o hoʻokahi faila. E mālama i kahi puke lapaʻau.
- E hoʻomaopopo i nā mea āpau: E haʻi i nā kauka āpau āu e ʻike ai e pili ana i nā hōʻailona hou āu e hoʻomohala ai, a inā paha e ʻoi aʻe ka ʻino o kahi hōʻailona kahiko.
- E nīnau i nā nīnau: Inā he mea āu i maopopo ʻole ai, mai makaʻu e nīnau hou i kāu kauka. He mea nui loa e loaʻa iā ʻoe kahi ʻike maikaʻi o kou maʻi a me ka lāʻau lapaʻau.
Pehea e koho ai au i ke kauka kūpono noʻu?
Pono ʻoe e loaʻa ka pilina maikaʻi me ke kauka e mālama nei iā ʻoe, no ka mea, he huakaʻi lōʻihi kēia.
He kuleana ko ʻoukou e koho i ke kauka nāna e hoʻolohe iā ʻoukou, e mālama iā ʻoukou me ka mahalo, a e hoʻomaopopo i kā ʻoukou mea e ʻōlelo nei.
Makemake paha ʻoe i ke kauka e like me kou kāne ponoʻī. A i ʻole, makemake paha ʻoe i kahi mea e wehewehe i nā mea ma ke ʻano hiki iā ʻoe ke hoʻomaopopo. I ka wā e hana ai me kahi maʻi hoʻoilina e like me kēia, he mea nui e ʻike i ke kauka nāna e alakaʻi iā ʻoe ma o ke ʻano o ka hopena i nā lālā ʻē aʻe o ka ʻohana a me nā hoʻokolohua a lākou e pono ai.
Inā ʻaʻole ʻoe e ʻoluʻolu me ke kauka mua āu e ʻike ai, mai hopohopo no ia mea. Aia kekahi mau kauka maikaʻi ʻē aʻe e kūpono iā ʻoe a hoʻomaopopo i kāu mau pono. E hana i kekahi noiʻi a loaʻa ke kauka maikaʻi loa nāu.
Leka Lawe-Home
- He maʻi ka hATTR amyloidosis e hoʻopilikia ana i nā ʻōkana he nui o ke kino, no laila e pono ʻoe i ke kākoʻo o kahi hui o nā kauka me ka ʻike loea i nā ʻano hana like ʻole.
- ʻO ka hana mua i kāu huakaʻi, ʻo ia ke ʻike ʻana i kāu kauka ʻohana (GP). Na ia e kuhikuhi iā ʻoe i nā loea kūpono.
- He mea nui e mālama i ka kamaʻilio maikaʻi ma waena o nā kauka a pau e mālama iā ʻoe. E mālama pono i kāu mau moʻolelo lapaʻau a pau.
- E hoʻokaʻawale i ka manawa e ʻimi ai i ke kauka e hoʻolohe iā ʻoe, mahalo iā ʻoe, a wehewehe maʻalahi i nā mea iā ʻoe. ʻO ka ʻimi ʻana i ka lāʻau lapaʻau me ke kauka āu e ʻoluʻolu ai a hilinaʻi hoʻi he mea nui loa ia no kou olakino noʻonoʻo.
- E hoʻomanaʻo ʻaʻole ʻoe hoʻokahi i kēia huakaʻi. Me ke alakaʻi ʻana o ka hui lapaʻau kūpono, hiki iā ʻoe ke ola me ka holomua me kēia maʻi.
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