He pilikia kou i nā puʻupaʻa? A i ʻole ua haʻi aku kekahi kauka iā ʻoe ʻaʻole hana pono kou mau puʻupaʻa? I kekahi manawa, ke pono ʻoe e hana i kahi scan e like me ka Magnetic Resonance Imaging (MRI), pono ʻoe e akahele iki e pili ana i ka dye kūikawā i hoʻohana ʻia. I kēia lā, e kamaʻilio mākou e pili ana i kahi kūlana e hiki ke hana i ia mau manawa, akā he mea kakaikahi loa ia i kēia manawa, akā he mea pono ke ʻike. Ua kapa ʻia kēia ʻo Nephrogenic Systemic Fibrosis (NSF).
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He aha kēia NSF (Nephrogenic Systemic Fibrosis)? I ka pōkole...
I ka ʻōlelo maʻalahi, he maʻi laha ʻole ka Nephrogenic Systemic Fibrosis (NSF). Loaʻa pinepine ia i nā poʻe me ka maʻi puʻupaʻa, ʻoiai ka poʻe me ka hana puʻupaʻa i hoʻopilikia ʻia. Hiki ke loaʻa kēia maʻi ma hope o ka hāʻawi ʻia ʻana o nā mea hoʻohālikelike gadolinium (GBCA) i kekahi i ka wā o ka scan, e like me ka MRI, e hoʻomālamalama i nā kiʻi.
E noʻonoʻo e pili ana i ia mea, ʻo ko kākou mau puʻupaʻa ka mea e kānana i nā mea makemake ʻole ʻia i loko o ko kākou kino a hoʻopuka iā lākou me ka mimi. No laila, ke komo kēia mau mea i kapa ʻia ʻo "GBCAs" i loko o ke kino o kekahi kanaka nona nā puʻupaʻa e hana pono ʻole ana, ʻaʻole lākou e wehe pono ʻia mai ke kino. ʻO ia ka manawa e kū mai ai ka pilikia o ka NSF.
Ua ʻike anei ʻoe i ke kumu o ka NSF? Hiki i kou ʻili ke mānoanoa, paʻa, pehu, a ʻānai. I kekahi manawa, hiki i nā hono ke paʻakikī a paʻa i hoʻokahi kūlana. Ua kapa ʻia kēia he "joint contracture". ʻAʻole wale ia, akā i kekahi poʻe, hiki i kēia kūlana ke hoʻopilikia i nā ʻōpū i loko o ke kino, e like me nā ʻiʻo umauma, ka puʻuwai, a me nā māmā. ʻO ka mea e hana ʻia, ʻo ia ka mānoanoa a paʻa o nā ʻiʻo a puni kēlā mau ʻōpū.
ʻO ka mea nui loa, i ka manawa e hana ʻia ai ka NSF, ʻaʻohe lāʻau lapaʻau maopopo e hoʻōki a hoʻohuli paha iā ia.
Akā, mai hopohopo! Ua ʻōlelo ikaika aku ka US Food & Drug Administration (FDA) e kūʻē i ka hoʻohana ʻana i kekahi mau GBCA kahiko i nā poʻe maʻi puʻupaʻa. ʻAʻole i hōʻike ʻia nā GBCA hou ma ka mākeke e hoʻoulu ai i ka NSF i nā poʻe maʻi puʻupaʻa. He mea hōʻoluʻolu nui kēlā.
Pehea ka maʻamau o ka NSF i kēia manawa?
ʻO kaʻoiaʻiʻo, he mea kākaʻikahi loa ia i kēia manawa. ʻO kaʻoiaʻiʻo, ʻaʻohe hihia hou o NSF i hōʻike ʻia ma mua o 10 mau makahiki. Ma hope o 2006, i ka wā i ʻike ai ke kaiāulu lapaʻau i ka pilina ma waena o kēia mau "(GBCAs)" a me ka maʻi puʻupaʻa, ua emi nui ka nui o nā hōʻike o kēia maʻi.
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Check Availability →Pehea e ulu ai ka NSF? He aha nā hōʻailona?
Hiki ke ʻike ʻia nā hōʻailona o ka NSF i ka lā hoʻokahi i hoʻokomo ʻia ai nā mea hoʻohālikelike gadolinium (GBCA) i loko o ke kino. A i ʻole, hiki iā lākou ke ʻike ʻia i nā mahina ma hope. Ma kekahi noiʻi, ua loaʻa i kahi 50% o ka poʻe nā hōʻailona i loko o 12 mau lā.
ʻO nā hōʻailona nui e ʻike ʻia:
- Ka pehu ʻana, ka ʻūmiʻi, a me ka mānoanoa o ka ʻili: Hoʻopilikia pinepine kēia i nā wahi e like me nā lima, nā wāwae, a me ka umauma a me ka ʻōpū. ʻAʻole i hoʻopilikia pinepine ʻia ka maka.
- Nā kiko ʻeleʻele a i ʻole nā puʻupuʻu ma ka ʻili: I kekahi manawa hiki ke lilo ka ʻili i ʻoʻoleʻa, e like me ka ʻili ʻalani.
- Ka ʻili e ʻānai ana, pehu ana, a ʻeha paha.
- Ka hiki ʻole ke hoʻoneʻe i nā lālā a me nā hono ma ke ʻano maʻamau ma muli o ka mānoanoa a me ka pehu ʻana o ka ʻili.
No kekahi poʻe, hiki i kēia mau hōʻailona ke hoʻopilikia i nā ʻōpū a me nā ʻiʻo o loko o ke kino. Eia kekahi mau mea āu e ʻike ai:
- Ka nāwaliwali nui o nā ʻiʻo.
- Ma muli o ka paʻa o nā ʻiʻo, ʻaʻole hiki ke kulou pono a hoʻolōʻihi ʻia paha nā lālā (ʻo ia hoʻi, ua hoʻemi ʻia ka laulā o ka neʻe ʻana).
Inā holomua hou kēia fibrosis, a i ʻole ka mānoanoa o nā ʻiʻo, hiki iā ia ke alakaʻi i ke kūkulu ʻia ʻana o nā waihona paʻakikī i loko o nā ʻiʻo, nā māmā, ka esophagus, nā maka, a me ka puʻuwai. Hiki i kēia ke hoʻopilikia i ka hana o kēia mau ʻōpū. Hiki i kēia ke alakaʻi i nā kīnā lōʻihi a mau loa, a i kekahi mau hihia, hiki i ka make.
He aha ke kumu nui o ka NSF?
ʻO ka mea paha i hoʻokumu ʻia ai ka NSF ma muli o ka ʻike ʻana i nā (gadolinium-based contrast agents - GBCAs) i ʻōlelo ʻia ma luna. Hoʻohana ʻia kēia kemika i kapa ʻia ʻo gadolinium e hoʻomālamalama i nā kiʻi i nā scan (MRI). ʻAʻole maopopo loa pehea e hoʻokumu ai ka gadolinium i ka NSF. Eia nō naʻe, ua maopopo he pilina ma waena o ka maʻi puʻupaʻa a me (GBCAs). Ua hōʻike ʻia hoʻi e piʻi ka pilikia inā kiʻekiʻe ka nui o ka gadolinium i hāʻawi ʻia i ke kino, a i ʻole inā hoʻohana ʻia kekahi mau ʻano (GBCAs).
ʻO ka NSF ka mea maʻamau i nā poʻe me ka maʻi puʻupaʻa mau loa (CKD) a me ka poʻe e dialysis ma muli o ka hāʻule ʻana o ka puʻupaʻa.
Akā, e hoʻomanaʻo, ʻaʻohe hihia NSF hou i hōʻike ʻia ma kahi o 15 mau makahiki!
ʻO kēia no ka mea ʻoi aku ka paʻa o nā GBCA o kēia manawa a emi iki ka ʻawahia. Eia kekahi, ua kaupalena ʻia ka hoʻohana ʻana o ka gadolinium i ka poʻe me ka maʻi puʻupaʻa. ʻOiai ke kuhikuhi nei ka FDA ʻaʻole e hoʻohana ka poʻe me ka maʻi puʻupaʻa a i ʻole nā pilikia puʻupaʻa i nā GBCA kahiko.
ʻO wai ka mea e loaʻa ai kēia? (Nā kumu pilikia)
ʻO ke kumu nui o ka pilikia no ka hoʻomohala ʻana i ka NSF ʻo ia ka maʻi puʻupaʻa a i ʻole ka hana pono ʻole o ka puʻupaʻa. ʻO kēia ka loaʻa ʻana o ke ʻoki puʻupaʻa ma mua, ka loaʻa ʻana o kahi hoʻoili puʻupaʻa, a i ʻole hoʻokahi wale nō puʻupaʻa. Eia kekahi, inā he mau maʻi ʻē aʻe ko ke kanaka me ka maʻi puʻupaʻa, e like me nā pilikia koko a i ʻole nā maʻi, ʻoi aku ka kiʻekiʻe o ka pilikia o ka NSF.
Eia nō naʻe, ua ʻike nui nā kauka i ka pōʻino hiki ke hana ʻia e nā GBCA kahiko i nā poʻe me ka hana puʻupaʻa i hoʻemi ʻia. No laila, me nā ʻano hana palekana i loaʻa i kēia lā, ua emi loa kou pilikia o ka loaʻa ʻana o kēia maʻi.
He aha nā pilikia e hiki ke loaʻa mai ka NSF?
Hiki i nā pilikia o ka NSF ke koʻikoʻi loa a i kekahi manawa make. ʻO ka hōʻailona mua ka mānoanoa a i ʻole ka mānoanoa o ka ʻili. Eia naʻe, i ka wā e ʻoi aʻe ai ke kūlana, hiki i kēia ʻoʻoleʻa ke hoʻopilikia i nā ʻōpū a me nā ʻiʻo i loko o ke kino. No ka laʻana, hiki i kou mau ʻiʻo a me nā hono ke lilo i ʻoʻoleʻa loa i hiki ʻole iā ʻoe ke hoʻoneʻe iā lākou, e hiki ʻole ai ke hele. Inā hoʻopilikia ka NSF i nā māmā a i ʻole ka puʻuwai, hiki iā ia ke pilikia i ka hanu ʻana a i ʻole e hoʻopilikia i ka hiki o ka puʻuwai ke pamu i ke koko.
Pehea e ʻike pololei ʻia ai kēia maʻi? (Diagnosis)
ʻO ke ala wale nō e ʻike pono ai inā loaʻa iā ʻoe ka NSF, ʻo ia ka hana ʻana i kahi biopsy ʻili. Pili kēia i kahi kauka e lawe ana i kahi hāpana liʻiliʻi o kou ʻili a hoʻouna aku i kahi lab no ka nānā ʻana. Eia nō naʻe, e kauoha wale ke kauka i kēia hoʻāʻo inā, ma hope o ka lawe ʻana i kāu mōʻaukala olakino a me ka hana ʻana i kahi hoʻokolokolo kino, loaʻa iā lākou ke kānalua kūpono he NSF paha kāu.
He aha nā lāʻau lapaʻau no NSF?
ʻO kaʻoiaʻiʻo, ʻaʻohe lāʻau lapaʻau kikoʻī i ʻae ʻia no ka NSF i kēia manawa. No ka mea he kakaikahi loa ka maʻi, ua kaupalena ʻia ka noiʻi ʻana i nā lāʻau lapaʻau. Eia nō naʻe, aia kekahi mau lāʻau lapaʻau i hōʻike ʻia e hāʻawi i kahi hōʻoluʻolu no kekahi mau maʻi NSF:
- Ma hope o ka MRI, hiki i ka dialysis ke wehe i ka gadolinium mai ke kino. He mea kōkua paha kēia no ka poʻe me ka maʻi puʻupaʻa mau loa. Eia nō naʻe, ʻaʻohe hōʻike e hoʻōki loa kēia i ka ulu ʻana o ka NSF.
- Hiki i ka hoʻoikaika kino ke kōkua i ka mālama ʻana i ka maʻalahi a me ka neʻe ʻana i nā hono.
- ʻO ka hoʻoili ʻana i nā puʻupaʻa kahi koho e noʻonoʻo ai kekahi mau maʻi NSF.
Inā loaʻa iā ʻoe ka maʻi puʻupaʻa, ʻoi aku ka maikaʻi o ka pale ʻana i ka ʻike ʻana i ka gadolinium. Eia nō naʻe, i kekahi manawa pono paha ka gadolinium e kiʻi i nā kiʻi maikaʻi loa mai kahi MRI. I kēlā mau hihia, pono nā kauka e kaupaona i nā pono o ka MRI e kūʻē i nā pilikia o ka ʻike ʻana i ka gadolinium. Inā loaʻa iā ʻoe nā pilikia puʻupaʻa a kauoha kāu kauka i kahi MRI me kahi dye, e ʻoluʻolu e nīnau i kāu kauka inā he pilikia ʻoe no ka NSF.
Aia kekahi mau ala e pale aku ai i ka NSF? (Ka pale ʻana)
ʻO ke ala maikaʻi loa e pale aku ai i ka NSF, ʻo ia ka pale ʻana i ka hoʻohana ʻana i nā GBCA kahiko i nā poʻe me ka maʻi puʻupaʻa. ʻOi aku ka palekana o nā GBCA hou a ʻaʻole i ʻawahia i nā poʻe maʻi puʻupaʻa.
Manaʻo ka FDA ʻaʻole e hoʻohana nā kānaka me kekahi mau maʻi puʻupaʻa i nā mea hoʻoheheʻe gadolinium ke ʻole he koho ʻē aʻe.
No nā poʻe me ka hana puʻupaʻa maʻamau, ʻaʻohe pilikia o ka hoʻohana ʻana i nā GBCA.
He aha ka nui o ka make ma muli o ka NSF?
Ma mua o 2019, ua hōʻike ka FDA i 3,094 mau hihia o NSF a me 742 mau make e pili ana. Eia naʻe, e like me ka mea i ʻōlelo ʻia ma mua, ʻaʻohe hihia hou i hōʻike ʻia ma mua o 10 mau makahiki. ʻO ke kumu nui o kēia, ʻo ia ka ʻike o ka FDA a me ke kaiāulu lapaʻau i nā hopena o GBCAs i nā poʻe maʻi puʻupaʻa.
Āhea mākou e ʻimi ai i ke aʻo lapaʻau?
Inā loaʻa iā ʻoe ka maʻi puʻupaʻa a ʻike ʻoe i kekahi o kēia mau hōʻailona, e ʻike koke i ke kauka no ka mea he hōʻailona paha ia o NSF:
- Ka hoʻopaʻa ʻana a ka mānoanoa ʻana paha o ka ʻili.
- ʻIli ʻānai a pehu paha.
- Nā kiko ʻulaʻula a ʻeleʻele paha ma ka ʻili.
Me nā kaʻina hana palekana o kēia manawa, ua haʻahaʻa loa ka manawa e ʻike ʻia ai ʻoe me ka NSF. Eia nō naʻe, inā he maʻi puʻupaʻa kou a pono ʻoe e hana i kahi MRI, e kamaʻilio me kāu kauka e pili ana i ka NSF a me nā pilikia iā ʻoe. ʻOiai ʻaʻole ʻawahia nā GBCA hou a ʻike ʻia he palekana, he manaʻo maikaʻi mau ia e kaʻana like i kou mōʻaukala olakino me kāu kauka a kūkākūkā i nā pilikia.
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ʻAe, i kēia manawa ua ʻoi aku kou maopopo i ka mea a mākou i kamaʻilio ai, NSF. E hōʻuluʻulu kākou i nā mea nui loa:
- He maʻi laha ʻole ka NSF, ʻoi aku hoʻi i nā poʻe me ka maʻi puʻupaʻa, a hiki ke hana ʻia e kekahi mau mea hoʻohālikelike MRI kahiko.
- ʻAʻohe hihia hou o NSF i hōʻike ʻia i kēia manawa. ʻO kēia ma muli o ka hoʻohana ʻana i nā mea hoʻohālikelike palekana hou a me ka ʻike o nā kauka.
- ʻO nā hōʻailona nui ka mānoanoa o ka ʻili, ka paʻa, ka maneʻo, a me nā pilikia o nā hono.
- Inā loaʻa iā ʻoe ka maʻi puʻupaʻa, e kamaʻilio me kāu kauka e pili ana i nā kala i hoʻohana ʻia a me ka pilikia o NSF ma mua o ka loaʻa ʻana o kahi MRI.
- ʻAʻohe mea e makaʻu ai, no ka mea, me nā ʻano hana o kēia wā, ua haʻahaʻa loa kēia pilikia. Eia nō naʻe, pono mau ka makaʻala.
ʻO ka mālama ʻana i kou olakino ka mea nui loa. Inā he mau nīnau a hopohopo paha kāu, mai hoʻokaʻulua i ka ʻimi ʻana i ke kōkua lapaʻau.
ʻO ka fibrosis ʻōnaehana nephrogenic, maʻi puʻupaʻa, scan MRI, gadolinium, nā maʻi ʻili, GBCAs, nā maʻi laha ʻole
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