Inā loaʻa iā ʻoe kahi maʻi lōʻihi, a mau paha, e like me ka hoʻoilina ATTR amyloidosis, pono ʻoe i kahi hui nui o nā kauka a me nā loea mālama ola e kōkua iā ʻoe e hoʻokele. He ʻoiaʻiʻo loa kēia no ka poʻe me ka hATTR amyloidosis. He maʻi genetic kēia. ʻO ka mea e hana ʻia, ʻo ia ka hōʻiliʻili ʻana o kahi protein ʻano ʻē i kapa ʻia ʻo amyloid i loko o nā ʻōpū koʻikoʻi e like me kou puʻuwai, nā puʻupaʻa, ka ʻōnaehana nerve, a me nā ʻōpū. No laila, no ka mea, hoʻopilikia kēia maʻi i nā ʻāpana he nui o kou kino, e komo pū ana kāu hui mālama ola hATTR i kekahi mau loea.
ʻO wai ka poʻe ma kāu hui lapaʻau amyloidosis hATTR?
E nānā kākou i nā loea lapaʻau koʻikoʻi e kōkua iā ʻoe me kāu mālama ola kino. E hui pū lākou, e kōkua maikaʻi lākou iā ʻoe e hoʻokele i kou kūlana.
Kauka lapaʻau noʻonoʻo
I loko o ka hATTR, he mea maʻamau loa kahi kūlana i kapa ʻia ʻo peripheral neuropathy . I ka ʻōlelo maʻalahi, he hōʻino kēia i nā aʻalolo i kou mau lima, nā wāwae, a me nā wāwae haʻahaʻa. Hiki iā ʻoe ke ʻike i nā hōʻailona e like me kēia:
I ka holomua ʻana o ka maʻi, hiki i kou mau ʻiʻo ke lilo i ʻoʻoleʻa a nāwaliwali, e paʻakikī ai ke hele a hana i kekahi mea e pono ai nā mākau kaʻa maikaʻi.
E hana kekahi kauka neurologist i nā hoʻokolohua, e like me ka hoʻāʻo hoʻokele aʻalolo, e nānā pono i kāu hana aʻalolo peripheral. E kōkua kēia i ka hoʻoholo ʻana inā he maʻi neurological kou a pehea kona koʻikoʻi.
Hiki i nā lāʻau lapaʻau he nui i ʻāpono ʻia no ka hATTR ke kōkua i ka mālama ʻana i kou maʻi neurological. Hiki i kāu kauka ke kuhikuhi i nā lāʻau lapaʻau ʻē aʻe e kōkua ai i ka ʻeha o ke aʻalolo.
| Māhele lāʻau lapaʻau | Nā laʻana o nā lāʻau lapaʻau |
|---|---|
| Nā lāʻau lapaʻau i ʻae ʻia no hATTR | Eplontersen (Wainua), Inotersen (Tegsedi), Patisiran (Onpattro), Vutrisiran (Amvuttra) |
| Nā lāʻau lapaʻau no ka ʻeha o ke aʻalolo | ʻAmitriptyline, Duloxetine (Cymbalta), Gabapentin (Neurontin), Pregabalin (Lyrica) |
Kauka Puʻuwai
Hoʻōla kēia kauka i nā maʻi o ka puʻuwai a me nā kīʻaha koko. ʻOi aku ka nui o ka pilikia o ka poʻe me ka hATTR i ka maʻi puʻuwai. ʻO kēia no ka mea hiki i nā waihona amyloid ke hōʻiliʻili i loko o ka puʻuwai. Hiki i kēia ke alakaʻi i nā kūlana penei:
ʻO ka mea nui e ʻike i kēia mau hōʻailona a e ʻimi koke i ke kōkua lapaʻau inā pono.
| Nā hopena hiki ke loaʻa ma ka puʻuwai | He wehewehe maʻalahi |
|---|---|
| Ka hāʻule ʻana o ka puʻuwai paʻa | Hoʻonāwaliwali ka puʻuwai a hōʻiliʻili ka wai i loko o nā māmā a me nā ʻiʻo ʻē aʻe. |
| ʻO ke cardiomyopathy hypertrophic | Ka mānoanoa o ka ʻiʻo puʻuwai. |
| Maʻi puʻuwai coronary | Ka ālai ʻana o nā kīʻaha koko e hoʻolako ana i ka puʻuwai. |
| ʻArrhythmia | Puʻuwai kūpono ʻole. |
| ʻO ka syncope | Ka poniuniu a i ʻole ka māʻule ʻana. |
Inā ua ʻike ʻia ʻoe me ka hATTR, e hana kāu kauka puʻuwai i kekahi mau hoʻokolohua e ʻike ai i ka maikaʻi o ka hana ʻana o kou puʻuwai. Hiki i kēia ke komo pū me kahi echocardiogram , kahi scan MRI , kahi hoʻāʻo hele wāwae 6-minuke, a me nā hoʻāʻo koko. Inā nāwaliwali kou puʻuwai, e hāʻawi ʻia ʻoe i nā lāʻau lapaʻau e hoʻokele i ke kūlana, e like me nā diuretics, nā kaohi paʻakai a me ke kahe, a me kahi pacemaker paha.
Kauka maka
Inā loaʻa iā ʻoe ka hATTR, he mea nui e ʻike pinepine i kahi loea maka . Ma kahi o 20% o nā hoʻololi genetic e hoʻoulu ai i ka hATTR e hoʻopilikia i nā maka. Hiki i kēia ke hana i nā hōʻailona e like me:
- Nā mea lana ʻeleʻele (ʻike i nā kiko ʻeleʻele e lana ana i mua o nā maka)
- Nā maka maloʻo
- Glaucoma a i ʻole ke kaomi maka i hoʻonui ʻia
- ʻO ka opacity vitreous (ke ao ʻana o ka gel maopopo e hoʻopiha ana i ka maka)
- Nā loli ʻike ʻē aʻe
Inā pono, hiki i kāu kauka maka ke hana i kahi ʻoki kino i kapa ʻia he trabeculectomy e mālama i ka glaucoma. Hiki iā ia ke hana i kahi ʻoki kino i kapa ʻia he vitrectomy e wehe i ka gel mai ka maka.
Kākā'ōlelo Hoʻoilina
Inā kānalua kāu kauka he hATTR kou, e kuhikuhi ʻo ia iā ʻoe i kahi kākāʻōlelo genetic . Hiki iā lākou ke hoʻāʻo no ka hoʻololi ʻana o ka gene e hiki ai ke hoʻoulu i ka maʻi. Eia kekahi, inā ua ʻike ʻia kekahi o kou ʻohana pili (makua, kaikaina, a keiki paha) me hATTR, pono ʻoe e hoʻāʻo ʻia. ʻO kēia no ka mea he 50% ka manawa kūpono o nā ʻohana pili e hoʻoilina i kēia hoʻololi ʻana o ka gene. E wehewehe ke kākāʻōlelo genetic i kēia mau hoʻāʻo iā ʻoe a kūkākūkā me ʻoe ke loaʻa nā hopena.
Nā lālā koʻikoʻi ʻē aʻe o kāu hui lapaʻau
Ma waho aʻe o nā loea i ʻōlelo ʻia ma luna nei, he kuleana koʻikoʻi ko kekahi mau mea ʻē aʻe i kou olakino maikaʻi.
| ʻOihana | Pehea lā e hiki ai iā lākou ke kōkua iā ʻoe? |
|---|---|
| Kauka Nephrologist | Ma kahi o ka hapakolu o ka poʻe me ka hATTR e loaʻa paha nā waihona amyloid i loko o ko lākou mau puʻupaʻa. ʻAʻole pono paha ʻoe e ʻike i kēia loea a hiki i kou loaʻa ʻana o nā hōʻailona o ka maʻi puʻupaʻa. E nānā kāu kauka mālama mua i kāu hana puʻupaʻa me nā hoʻāʻo koko makahiki (e like me ka serum creatinine ). Inā ʻaʻole kūpono kēia mau hoʻāʻo, e kuhikuhi ʻia ʻoe i kahi nephrologist. |
| Kauka Lapaʻau Orthopedic | ʻOi aku ka nui o ka pilikia o nā maʻi me ka hATTR i ka loaʻa ʻana o ka carpal tunnel syndrome . Hiki ke hana ʻia kēia e nā waihona amyloid i loko o nā pulima. Hiki ke ʻōlelo ʻia nā splint pulima a me nā hoʻoikaika kino i ka wā e hiamoe ana. I nā hihia koʻikoʻi, pono paha ke ʻoki ʻana. |
| Kauka Lapaʻau Kino/ʻOihana | Hiki i ka hATTR ke hoʻolilo i ka hele wāwae a me ka hana ʻana i nā hana o kēlā me kēia lā. Hiki i nā mea hoʻoponopono kino a me nā mea hoʻoponopono hana ke kōkua iā ʻoe e maʻalahi i kēia mau hana. Ua hōʻike ʻia nā haʻawina e hiki i ka hoʻohui ʻana i kēia mau lāʻau lapaʻau me nā lāʻau lapaʻau ʻē aʻe, e like me nā lāʻau lapaʻau, ke hoʻopuka i nā hopena maikaʻi. |
| Mea Hoʻolako Mālama Mua | ʻOiai inā ʻoe e ʻike i nā loea he nui, he ʻāpana koʻikoʻi kāu kauka ʻohana a kauka mālama mua paha o kāu hui. Hiki iā ia ke hana i kāu mau hoʻokolohua olakino makahiki, mālama iā ʻoe i kou wā maʻi, a hana ma ke ʻano he "alakaʻi" o kāu hui mālama ola, e kamaʻilio pū ana me nā kauka ʻē aʻe a pau. |
I ka manawa pinepine, hiki iā ʻoe ke loaʻa nā lawelawe āpau āu e pono ai ma kahi kikowaena lapaʻau a i ʻole kahi haukapila nui i loea i ka mālama ʻana i ka hATTR amyloidosis. ʻOi aku ka maʻalahi o kēia no kāu mau kauka āpau e hana pū ma ke ʻano he hui. E kamaʻilio me kāu kauka mālama mua e pili ana i ka hoʻonohonoho ʻana i kāu mālama ʻana.
Leka Lawe-Home
- He maʻi paʻakikī ka hATTR amyloidosis e hoʻopilikia ana i nā ʻōkana he nui i loko o ke kino, no laila pono ia i kahi hui o nā kauka me nā ʻike loea like ʻole e mālama ai.
- Hiki i kāu hui lapaʻau ke komo pū me nā loea ma nā wahi e like me ka neurology, cardiology, ophthalmology, a me ka nephrology.
- ʻO kāu kauka mālama mua (kauka ʻohana) ke loulou koʻikoʻi e hoʻonohonoho ana i kēia hui holoʻokoʻa.
- E kamaʻilio ākea me kāu hui lapaʻau e pili ana i kou kūlana, ka lāʻau lapaʻau, a me nā hopohopo āu e loaʻa ai. Mai makaʻu e nīnau i nā nīnau. He lālā hana ʻoe o kāu hui mālama ola.
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