He mea maʻamau ka makaʻu i ka wā e haʻi aku ai kāu kauka iā ʻoe a i kāu keiki paha he pilikia kou maʻi puʻupaʻa, a i ka manawa like, haʻi aku ʻo ia iā ʻoe i kahi inoa lōʻihi a paʻakikī e like me 'Complement 3 Glomerulopathy'. Ua kapa ʻia kēia ʻo 'C3G' no ka pōkole. He maʻi puʻupaʻa kakaikahi kēia. ʻOiai ʻo kēia maʻi e pili nui ana i nā keiki a me nā ʻōpio, hiki iā ia ke ulu i kēlā me kēia makahiki. No laila i kēia lā, e kamaʻilio kākou e pili ana i kēia maʻi i kapa ʻia ʻo C3G, me he mea lā e kamaʻilio ana kākou me kahi hoaaloha, ma ke ʻano maʻalahi loa.
He aha kēia C3G?
I ka ʻōlelo maʻalahi, ʻo C3G kahi maʻi puʻupaʻa i hoʻokumu ʻia e ka "ʻōnaehana hoʻopihapiha", ʻo ia kekahi hapa o ka ʻōnaehana pale o ko mākou kino, ʻaʻole e hana pono. Ua like kēia ʻōnaehana hoʻopihapiha me kahi mākaʻi e hakakā ana i nā germs a me nā bacteria e komo i loko o ko mākou kino. Eia nō naʻe, i loko o ke kanaka me C3G, ua hoʻopilikia ʻia ka hana a kēia ʻōnaehana, a hoʻomaka ia e hōʻino i ko lākou mau puʻupaʻa ponoʻī.
ʻElua ʻano nui o ka maʻi C3G:
1. Maʻi Waiho Paʻa (DDD)
2. C3 Glomerulonephritis (C3 Glomerulonephritis - C3GN)
Hiki ke hana ʻia nā ʻano ʻelua e nā kumu genetic (malia paha he hoʻoilina) a i ʻole nā pilikia olakino ʻē aʻe e kū mai ana i ka wā o ke ola.
He aha ke kumu o kēia? He aha ka mea e hana ʻia i nā puʻupaʻa?
E noʻonoʻo i ko kākou mau puʻupaʻa e like me nā kānana kī. Ua kapa ʻia kēia mau kānana he glomeruli . ʻO kēia nā mea e kānana i ko kākou koko, hoʻomaʻemaʻe iā ia, a wehe i nā huahana ʻōpala i makemake ʻole ʻia ma o ka mimi.
I loko o ka maʻi C3G, ʻo ka hana hewa i ʻōlelo ʻia ma luna nei i loko o ka ʻōnaehana hoʻopihapiha e hōʻino i kēia mau kānana palupalu i kapa ʻia ʻo glomeruli. Ke hana ʻia kēia hōʻino, hoʻonui ʻia nā pores i loko o ke kānana, a hoʻomaka nā protein, a me nā hunaola koko ʻulaʻula a me ke keʻokeʻo, pono e noho i loko o ke koko, e kahe i loko o ka mimi. I ka hala ʻana o ka manawa, hiki i kēia hōʻino ke hoʻonui a hiki i ka hāʻule ʻana o nā puʻupaʻa. Hōʻike kekahi mau noiʻi e pili ana ka DDD i nā poʻe ʻōpio ma mua o C3GN.
He aha nā hōʻailona o ka maʻi C3G?
ʻAʻole e ʻike nā kānaka a pau me C3G i nā hōʻailona like. Eia nō naʻe, he mea nui e makaʻala i kēia. E nānā kākou i nā hōʻailona nui.
| Hōʻailona | He wehewehe maʻalahi |
|---|---|
| ʻO ka protein i loko o ka mimi (Proteinuria) | Ka nui o ka protein i loko o ka mimi. Hiki ke huʻa ka mimi, ao, a ʻeleʻele paha. Ke koʻikoʻi kēia ʻano (nephrotic syndrome), hiki ke ʻike ʻia nā hōʻailona ʻē aʻe e like me ka pehu ʻana. |
| Ke koko i loko o ka mimi (Hematuria) | ʻO ka hōʻino ʻana i nā kānana puʻupaʻa ke kumu o ka hōʻiliʻili ʻana o nā hunaola koko ʻulaʻula i loko o ka mimi. Hiki i ka mimi ke lilo i ʻulaʻula, poni, a ʻeleʻele paha. |
| ʻEdema | Ma muli o ka hana pono ʻole ʻana o nā puʻupaʻa, hōʻiliʻili ka wai i loko o ke kino, e hoʻoulu ai i ka pehu ʻana ma nā wāwae, nā lima, nā kuʻekuʻe wāwae, a a puni nā maka. |
| Ke koko kiʻekiʻe | Hoʻonui ʻia ke kaomi i loko o nā kīʻaha koko ma muli o ka hoʻoneʻe pono ʻole ʻia ʻana o ka wai mai nā puʻupaʻa. |
| Luhi a me ka hiamoe | No ka mea, ʻaʻole kānana pono nā puʻupaʻa i nā mea ʻōpala, hōʻiliʻili lākou i loko o ke koko. Hiki i kēia ke hoʻopilikia i ka lolo a hoʻoulu i ka luhi, ka hiamoe, a me ka paʻakikī o ka noʻonoʻo ʻana. Hiki i ka maʻi puʻupaʻa ke hoʻoulu i ka anemia, hiki ke hoʻonui i ka luhi. |
| Nā maʻi pinepine | ʻO ka ʻōnaehana hoʻopihapiha nāwaliwali e hōʻemi i ka hiki o ke kino ke hakakā i nā germs, hiki ke alakaʻi i nā maʻi pinepine. |
| Nā pilikia maka | Hiki ke hōʻino ʻia ka ʻike maka ma muli o nā waihona protein a me nā momona (drusen) i loko o ka retina. |
| Ka waiho ʻana o ka momona i loko o ka ʻili i kūpono ʻole (Loaʻa ka lipodystrophy hapa) | ʻO ka luku ʻia ʻana o nā hunaola momona e ka ʻōnaehana hoʻopihapiha hiki ke hoʻomāmā i kekahi mau wahi o ke kino, aʻo nā wahi ʻē aʻe e lilo i mea nui aʻe a waiho ʻia ka momona. |
Eia kekahi, ʻo nā hōʻailona e like me ka nausea, ka luaʻi ʻana, ka nalowale o ka makemake, ka hiamoe ʻole, ka ʻili maloʻo a me ka maneʻo, kahi ʻono metala i loko o ka waha, a me ka ʻūlū ʻana o nā ʻiʻo i ka pō e hiki ke loaʻa i ka hāʻule ʻana o ka puʻupaʻa .
Pehea ʻoe e ʻike ai i kēia, e Kauka?
ʻO ke ala wale nō e ʻike maopopo ai i ka maʻi C3G, ʻo ia ka hana ʻana i kahi biopsy puʻupaʻa . Pili kēia i ka lawe ʻana i kahi ʻāpana liʻiliʻi o ka ʻiʻo puʻupaʻa ma lalo o kahi anesthetic māmā a nānā iā ia ma lalo o kahi microscope. ʻO kēia wale nō ke ala e hoʻoholo ai i ka nui o ka hōʻino ʻia i nā puʻupaʻa.
Eia kekahi, hiki i kāu kauka ke ʻōlelo i nā hoʻokolohua koko a me ka mimi a me ka hoʻāʻo ʻana i ka genetic.
He aha kaʻu e nīnau aku ai i ke kauka?
I kahi manawa e like me kēia, nui paha kāu mau nīnau ma kou manaʻo. E kūkākūkā pono i kēia mau mea me kāu kauka. Eia kekahi laʻana:
- Pehea i loaʻa ai iaʻu ʻo C3G?
- He aha ke ʻano o ka C3G iaʻu? (DDD a i ʻole C3GN?)
- He aha nā ala maikaʻi loa e mālama ai i koʻu olakino me kēia maʻi?
- He aha nā koho lapaʻau e loaʻa iaʻu?
- He aha kaʻu e manaʻo ai i ka wā e hiki mai ana me kēia maʻi?
He aha nā lāʻau lapaʻau no kēia?
ʻO kaʻoiaʻiʻo, ʻaʻohe lāʻau hoʻokahi e hiki ke ho'ōla loa i ka maʻi C3G. Eia nō naʻe, aia kekahi mau lāʻau e hiki ke kāohi i ka maʻi, hōʻemi i nā hōʻailona, a hōʻemi i ka hōʻino ʻana i nā puʻupaʻa.
- E kāohi i ke koko a me ka hoʻokuʻu ʻana o ka protein: Hiki i nā lāʻau lapaʻau koko (Angiotensin-converting enzyme (ACE) inhibitors a me Angiotensin II type-1 receptor blockers (ARBs)) ke hōʻemi i ka hoʻokuʻu ʻana o ka protein i loko o ka mimi a hoʻolohi i ka holomua o ka maʻi.
- Kaohi ʻana i ka cholesterol: Inā he kiʻekiʻe kou cholesterol (hyperlipidemia), ua hōʻike ʻia e ka noiʻi e hiki i nā lāʻau hoʻohaʻahaʻa cholesterol ke kōkua i ka kaohi ʻana i ka ʻino o ka maʻi C3G.
- Nā lāʻau pale kino: ʻO ka hui pū ʻana o nā lāʻau lapaʻau e kāohi ana i ka ʻōnaehana pale, e like me glucocorticoids a me mycophenolate mofetil (MMF), hiki ke pale i ka hoʻi hou ʻana i kekahi mau maʻi.
- Nā lāʻau lapaʻau hou: Hiki i nā lāʻau anti-complement e like me `eculizumab` ke kāohi i ka hana o ka ʻōnaehana complement a hoʻolohi i ka holomua o ka maʻi. Eia kekahi, ke aʻo ʻia nei kahi lāʻau hou i kapa ʻia ʻo `iptacopan`. Ua hōʻike ʻo ia i nā hopena hoʻohiki maikaʻi loa, no laila ua ʻae ʻia e hoʻolalelale i ka noiʻi ʻana ma luna.
Pehea lā wau e mālama ai iaʻu iho?
E like me nā lāʻau lapaʻau, pehea ʻoe e mālama ai iā ʻoe iho he mea nui loa ia i ka kaohi ʻana i kēia maʻi.
- ʻAi olakino: E ʻai i nā huaʻai he nui, nā mea kanu, nā legume, a me nā palaoa piha. E hōʻemi i ka momona momona, ka paʻakai, a me ke kō. Hiki i kāu kauka ke ʻōlelo aku iā ʻoe e hōʻemi i kāu potassium, sodium (paʻakai), a i ʻole ka phosphate. Mai hana i kekahi mau hoʻololi nui i kāu ʻai me ka ʻole o ka nīnau mua ʻana i kāu kauka.
- E mālama i kou olakino: ʻOiai inā maikaʻi kou manaʻo, e lawe i kāu mau lāʻau lapaʻau e like me ke kauoha a kāu kauka. E haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau ʻē aʻe, nā huaora, a i ʻole nā mea hoʻohui āu e lawe nei.
- Hoʻoikaika Kino: Hiki i ka hana kino ke kōkua iā ʻoe e hiamoe maikaʻi, hoʻonui i kou ikehu, a hōʻemi i kou pilikia o ka maʻi puʻuwai. E kamaʻilio me kāu kauka e pili ana i kahi hoʻolālā hoʻoikaika kino kūpono iā ʻoe.
- E hōʻalo i ka puhipaka: He mea maikaʻi loa kēia no kou olakino holoʻokoʻa.
- E kaupalena i ka waiʻona: E kamaʻilio me kāu kauka e pili ana i ka inu ʻana i ka waiʻona a e ʻimi i ka ʻōlelo aʻo.
He aha kā mākou e manaʻo ai no ka wā e hiki mai ana?
Ke ʻike ʻia ʻoe me ka maʻi C3G, e kōkua kāu hui lapaʻau iā ʻoe e ʻike i ka hoʻolālā lapaʻau maikaʻi loa.
I kekahi mau hihia, hiki i ka maʻi ke lilo i mea koʻikoʻi. Ma kahi o 50% o ka poʻe me C3G e loaʻa i ka maʻi renal pae hope loa (ESRD) i loko o 10 mau makahiki o ka hōʻoia ʻana. I kēia manawa, ua nalowale loa ka hiki o nā puʻupaʻa ke wehe i nā huahana ʻōpala. Pono paha ka dialysis a i ʻole ka hoʻoili puʻupaʻa .
Akā, he mea nui e hoʻomanaʻo ʻoiai ma hope o ka hoʻoili ʻana o ka puʻupaʻa, aia kahi manawa kūpono e hoʻi hou mai ai ka maʻi C3G i loko o ka puʻupaʻa hou. No laila, e kamaʻilio lōʻihi me kāu kauka e pili ana i ke koho maikaʻi loa nāu.
Hiki i kāu hui lapaʻau ke komo pū me kahi nephrologist, kahi hematologist, a me kahi pathologist. He mea nui e mālama i kahi pilina maikaʻi me lākou.
Leka Lawe-Home
- He maʻi puʻupaʻa kakaikahi akā koʻikoʻi ka C3G i hoʻokumu ʻia e kahi kīnā i ka ʻōnaehana hoʻopihapiha, ʻo ia kekahi ʻāpana o ka ʻōnaehana pale o ke kino.
- ʻO nā hōʻailona nui e komo pū me ka protein a i ʻole ke koko i loko o ka mimi, ka pehu ʻana, ke koko kiʻekiʻe, a me ka luhi.
- Hoʻomaopopo maopopo ʻia ka maʻi me ka biopsy o ka puʻupaʻa.
- ʻOiai ʻaʻohe lāʻau lapaʻau kūikawā no kēia, hiki ke kaohi ʻia ka maʻi a hiki ke pale ʻia nā puʻupaʻa ma o ka kaohi ʻana i ke koko, nā lāʻau lapaʻau e kaohi ai i ka pale ʻana, a me ke ola kino olakino.
- He mea nui loa ia e noho mau i ka launa pū ʻana me kāu hui lapaʻau a hahai pololei i kā lākou mau ʻōlelo aʻoaʻo.
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