Loaʻa iā ʻoe a i ʻole kekahi mea kokoke iā ʻoe kahi maʻi laha ʻole i kapa ʻia ʻo hATTR amyloidosis ? A laila, ʻo ka hele ʻana i ke kauka he ʻāpana maʻamau paha ia o kou ola. Akā i kēlā me kēia manawa a mākou e hele ai i ke kauka, he mea nui loa ia e hoʻohana pono i kēlā kipa. ʻO ke ala maikaʻi loa e hana ai i kēlā, ʻo ia ka hoʻomākaukau iki ma mua o ka hele ʻana i ke kauka. Ke hele ʻoe i ke kauka ma kēia ʻano, e ʻoluʻolu ʻoe a e kōkua pū ia i ke kauka e hoʻoholo i ka lāʻau kūpono loa nāu. E nānā kākou pehea e hoʻomākaukau ai no kēia?
ʻO ka mea mua, e hoʻomaopopo kākou, he aha ka hATTR Amyloidosis?
I ka ʻōlelo maʻalahi, he maʻi laha ʻole ka hATTR i hoʻoilina ʻia, ʻo ia hoʻi, ua hoʻoili ʻia ma o nā genes i loko o nā ʻohana. I ka pololei, ʻo ia kekahi o nā ʻano maʻi i kapa ʻia ʻo Transthyretin Amyloidosis (ATTR). Hiki i kēia maʻi ke lilo i mea ʻino i ka hala ʻana o ka manawa, no laila he mea nui loa ka ʻike ʻana i ka maʻi a hoʻomaka i ka mālama ʻana i ka wā hikiwawe loa .
Hiki i kēia maʻi ke hoʻopilikia i nā ʻōkana he nui i loko o ko mākou kino, no laila pono paha ʻoe e ʻike i kekahi mau loea like ʻole ma kahi o hoʻokahi wale nō. Eia kekahi laʻana:
- Kauka Puʻuwai
- Kauka Hematology
- Kauka lapaʻau noʻonoʻo
ʻAʻole hana kēia mau kauka a pau ma ka ʻōnaehana haukapila hoʻokahi. No laila, mai manaʻo ʻoe ua loaʻa kāu ʻike i hāʻawi ʻia i kekahi kauka i kekahi. I kekahi manawa, no ka mea ʻaʻole i pili nā ʻōnaehana kamepiula o nā haukapila, ʻaʻole i kaʻana like ʻia kāu mau moʻolelo lapaʻau. No laila he mea nui e lawe pū me ʻoe i kāu ʻike i kēlā me kēia manawa.
Nā mea pono ʻoe e lawe mai i kou wā e hele ai i ke kauka
ʻOiai inā loaʻa i kāu kauka kāu mau moʻolelo lapaʻau kahiko, he manaʻo maikaʻi e lawe mai i ka ʻike hou loa me ʻoe i kēlā me kēia manawa. He mea maʻalahi loa ia no ʻoe ke hoʻonohonoho pono a mākaukau i kēia mau mea i loko o hoʻokahi faila.
| He aha e hoʻomākaukau ai | Nā kikoʻī e hoʻokomo |
|---|---|
| He papa inoa o nā hōʻailona | E kākau i lalo i nā hōʻailona āpau o ka hATTR āu e ʻike nei. No ka laʻana, ka luaʻi ʻana, nā maka maloʻo, nā kiko ʻeleʻele e lana ana i mua o kou mau maka, ka emi ʻana o ke kaumaha, ka manaʻo piha ʻoiai ma hope o ka ʻai ʻana i kahi meaʻai liʻiliʻi, ka pehu ʻana i kou mau wāwae, ka carpal tunnel syndrome. Eia kekahi, e haʻi i kāu kauka e pili ana i nā hōʻailona kakaikahi e like me ke poʻo ʻeha, ka hahau ʻana, ka nalowale o ka hoʻomanaʻo, a i ʻole nā hopu ʻana. Hiki ke loli nā hōʻailona i ka hala ʻana o ka manawa, no laila e haʻi i kāu kauka e pili ana i nā loli. He mea nui e haʻi i kāu kauka inā loaʻa iā ʻoe kekahi mau hōʻailona ʻē aʻe āu e manaʻo nei ʻaʻole pili i ka hATTR. |
| Nā lāʻau lapaʻau, nā wikamina a me nā mea hoʻohui | E kākau i lalo i kēlā me kēia lāʻau lapaʻau, wikamina, a me nā mea hoʻohui āu e lawe ai. E hoʻokomo i ka nui o ka lāʻau, ka manawa āu e lawe ai, a me ka hale kūʻai lāʻau e hoʻolako ana iā ia. Inā he mau lāʻau lapaʻau kūikawā no hATTR (e.g., eplontersen (Wainua) , inotersen (Tegsedi) , patisiran (Onpattro) , tafamidis (Vyndamax) ), e hōʻoia e kākau iā lākou i lalo. Hiki ke hoʻokomo ʻia nā lāʻau lapaʻau ma luna o ke kūʻai aku e like me Panadol a me Vitamin C i loko o kēia papa inoa. |
| ʻO kāu moʻolelo lapaʻau a me kou ʻohana | E haʻi i kāu kauka e pili ana i nā maʻi ʻē aʻe āu i loaʻa ai (e laʻa me ka maʻi diabetes, ke koko kiʻekiʻe), a me nā ʻoki kino āu i hana ai. ʻO ka mea nui loa, e haʻi i kou ʻohana pili (nā mākua, nā kaikaina) e pili ana i nā maʻi āu i loaʻa ai. Inā loaʻa i kekahi o kou ʻohana ka hATTR, e haʻi iā lākou i nā hōʻailona nui. |
| Nā Hualoaʻa Hoʻāʻo | E lawe mai i nā hopena hoʻāʻo a pau e pili ana i ka hATTR. ʻO kēia mau mea e komo pū me nā hoʻāʻo koko, nā hoʻāʻo neurological, nā hoʻāʻo puʻuwai (ECG, Echo), nā hōʻike scan MRI, a me nā hōʻike biopsy. ʻOi loa aku, inā loaʻa iā ʻoe kekahi mau laʻana ʻiʻo i lawe ʻia mai kāu biopsy pad momona o ka ʻōpū a i ʻole nā ʻōpū ʻē aʻe, e hōʻoia e lawe mai iā lākou. |
| Nā Hualoaʻa Hoʻāʻo Genetic | ʻO kēia ka hōʻike koʻikoʻi loa. E hōʻoia e lawe mai i ka hōʻike hoʻāʻo genetic mua i hōʻoia i loaʻa iā ʻoe kahi mutation i loko o ka gene Transthyretin (TTR). Inā ua loaʻa i kekahi o kou ʻohana (nā mākua, nā kaikaina, nā keiki) ka hoʻāʻo genetic no hATTR, pono e lawe pū ʻia kēlā mau hōʻike me ʻoe. |
| He papa inoa o nā nīnau e nīnau ai | E poina paha iā ʻoe ka mea āu e makemake ai e nīnau i ke kauka. No laila, ma mua o kou hele ʻana, e kākau i kāu mau nīnau ma kahi ʻāpana pepa. E lawe mai hoʻi i kahi puke liʻiliʻi a me ka peni e kākau i ka mea a ke kauka e ʻōlelo ai. Inā paʻakikī iā ʻoe ke hana wale i kēia mau mea, mai makaʻu e lawe mai i kahi lālā o ka ʻohana a i ʻole hoaaloha hilinaʻi no ke kōkua. |
No ke aha he mea nui ka hoʻomākaukau ʻana ma kēia ʻano?
E noʻonoʻo, ʻo kēia mau kikoʻī kikoʻī āu e hāʻawi ai ua like ia me ke kiʻi i ke kauka. Kōkua ia iā ia e loaʻa kahi ʻike piha o kou kūlana olakino. A laila hiki iā ia ke kuhikuhi i ka lāʻau kūpono a pololei loa nāu.
E like me ka mea i ʻōlelo ʻia ma mua, ʻaʻole i kaʻana like ʻia ka ʻike ma waena o nā haukapila. No laila, mai manaʻo ua ʻike kāu kauka i kāu mōʻaukala olakino. ʻOi aku ka maikaʻi a me ka palekana e lawe mai i kāu ʻike ponoʻī.
Inā ʻoe e hoʻoikaika iki a hoʻomākaukau ma mua o kou hele ʻana e ʻike i ke kauka, hiki iā ʻoe ke loaʻa ka mea nui loa mai kēlā manawa i hoʻonohonoho ʻia. He kōkua nui ia ʻaʻole wale iā ʻoe, akā, i ke kauka nāna ʻoe e mālama nei.
Leka Lawe-Home
- I kēlā me kēia manawa āu e hele ai e ʻike i ke kauka no ka hATTR, e hoʻomākaukau no ia ma mua.
- E mālama i kāu mau hōʻailona, nā lāʻau lapaʻau āpau āu e hoʻohana ai, nā hōʻike hoʻāʻo (ʻoiai nā hōʻike hoʻāʻo genetic), a me ka mōʻaukala lapaʻau ʻohana i loko o hoʻokahi faila.
- E kākau i kāu mau nīnau ma kahi ʻāpana pepa ma mua, no ka mea e poina paha iā ʻoe. Mai makaʻu e lawe mai i kekahi no ke kōkua.
- ʻO ka ʻike āu e hāʻawi mai ai e kōkua nui i ke kauka e hoʻomaopopo i kou kūlana a hāʻawi i ka lāʻau lapaʻau maikaʻi loa.
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