ʻO ka lāʻau lapaʻau ʻo Amvuttra no ka maʻi hoʻonāwaliwali i ke aʻalolo kakaikahi (hATTR Polyneuropathy)

Ke manaʻo nei ʻoe i ka mae wale a i ʻole ke kani ʻana ma kou mau lima a me kou mau wāwae? A i ʻole he nāwaliwali kou mau ʻiʻo a he paʻakikī ke hele? I kekahi manawa, hiki ke hana ʻia kēia mau hōʻailona e kahi maʻi laha ʻole a mākou i lohe ʻole ai. I kēia lā, e kamaʻilio mākou e pili ana i kekahi o ia ʻano maʻi a me kahi lāʻau hou no ia.

He aha ka hATTR? Pehea e hana ai ʻo Amvuttra?

I ka ʻōlelo maʻalahi, he maʻi hoʻoilina ka hATTR (Hereditary Transthyretin-Mediated Amyloidosis) . No loko ia o kahi hui o nā maʻi i kapa ʻia ʻo amyloidosis. I loko o kēia mau maʻi, hoʻololi kekahi mau protein i loko o ko mākou kino i ko lākou ʻano, hōʻiliʻili ma nā ʻano maʻamau ʻole, a waiho i loko o nā ʻōkana like ʻole.

I loko o ka maʻi hATTR, ua waiho ʻia kahi protein i kapa ʻia ʻo Transthyretin (TTR) ma kēia ʻano. He protein maikaʻi maoli ʻo TTR i hana ʻia i loko o ko kākou akepaʻa a kōkua i ka lawe ʻana i nā hormones thyroid a me ka huaora A ma ke kino holoʻokoʻa. Eia nō naʻe, he loli iki ko ke kanaka me ka maʻi hATTR i loko o ka gene TTR, ʻo ia hoʻi, he mutation. ʻO ka hopena, ʻo ka protein TTR i hana ʻia aia ma ke ʻano kūpono ʻole. Hōʻiliʻili kēia protein misshapen a waiho ʻia ma nā wahi e like me nā aʻalolo, ka puʻuwai, a me ka ʻōnaehana hoʻoheheʻe ʻana ma ke ʻano he mau waihona i kapa ʻia ʻo amyloid .

Ke hōʻiliʻili kēia mau waihona a puni nā aʻalolo, ua hōʻino ʻia lākou. Kāhea mākou i kēia he polyneuropathy . ʻO ia ka manawa e kū mai ai nā hōʻailona i ʻōlelo ʻia ma mua, e like me ka mumū, ka mae ʻana, ka ʻeha, a me ka paʻakikī i ka hele wāwae .

Hana ka lāʻau lapaʻau ʻo Amvuttra ma ka hoʻēmi ʻana i ka nui o kēia protein TTR ʻano ʻē i hana ʻia e ke akepaʻa. Hoʻemi kēia i ka hōʻiliʻili ʻana o nā waihona amyloid i loko o ke kino, e kōkua ana i ka kaohi ʻana i nā hōʻailona a pale a hoʻopaneʻe paha i ka maʻi mai ka ʻoi aku ka ʻino.

E paipai pū kāu kauka i nā hoʻololi i kāu papaʻai a me kāu hana hoʻoikaika kino, me ka mālama ʻana i kāu mau hōʻailona. A hiki i kēia manawa, ʻo nā koho lapaʻau wale nō no kēia maʻi ka kaohi ʻana i nā hōʻailona a, inā pono, nā hoʻoili ʻana o ke akepaʻa a i ʻole ka puʻuwai. Akā, ʻo nā lāʻau lapaʻau hou e like me Amvuttra i kēia manawa e ʻae iā ʻoe e kaohi i ka maʻi ma ka hoʻemi ʻana i ka protein TTR, ʻo ia ke kumu nui o ka maʻi.

Pehea ʻoe e hoʻohana ai i kēia lāʻau lapaʻau?

He ʻiniki ʻo Amvuttra i hāʻawi ʻia ma lalo o ka ʻili . Hāʻawi ʻia e kekahi loea olakino, e like me ke kauka a i ʻole ke kahu maʻi i aʻo ʻia. Hāʻawi pinepine ʻia ʻehā manawa i ka makahiki (i kēlā me kēia ʻekolu mahina) . Hiki iā ʻoe ke hoʻonohonoho e loaʻa ka lāʻau pale ma ke keʻena o kāu kauka, ma kahi keʻena lapaʻau, a i ʻole ma ka home.

Pehea i noiʻi ʻia ai kēia lāʻau lapaʻau?

E like me nā lāʻau lapaʻau hou a pau, ua hoʻāʻo ʻia ʻo Amvuttra i nā hoʻokolohua lapaʻau e hoʻoholo ai i kona pono a me ka palekana. Ma kēia hoʻokolohua, ua hoʻohālikelike ʻia kahi hui o nā maʻi i loaʻa iā Amvuttra me kahi hui o nā maʻi i loaʻa i kahi placebo , kahi lāʻau lapaʻau dummy ʻaʻohe mea hana. Penei mākou e hiki ai ke hoʻoholo inā hana maoli ka lāʻau.

Ua komo pū ka noiʻi i nā poʻe maʻi me ka maʻi hATTR a me ka polyneuropathy hopena. Ua ana ʻia ko lākou nāwaliwali o ke aʻalolo, ka ikaika o nā ʻiʻo, a me ka hiki ke hana i nā hana o kēlā me kēia lā me ka hoʻohana ʻana i nā ʻōnaehana helu kūikawā.

Wahi a nā hopena o ke aʻo ʻana, ua hoʻomaikaʻi nā maʻi i loaʻa iā Amvuttra i kā lākou hana neurological a me ke ʻano o ke ola. ʻOiai ua emi iho kā lākou mau helu neurological a ua hoʻomaikaʻi ʻia nā hōʻailona, ​​​​ua ʻike ka poʻe i loaʻa i ka placebo i ka piʻi ʻana o nā hōʻailona.

Āhea wau e hoʻomaka ai e ʻike i nā hopena o ka lāʻau lapaʻau?

ʻAʻole kēia he hoʻoponopono wikiwiki. I ka hoʻomaka mālie ʻana o ka lāʻau lapaʻau e hana i loko o kou kino, e ʻike paha ʻoe i ka emi ʻana a i ʻole ka hoʻomaikaʻi ʻana i kāu mau hōʻailona i loko o kekahi mau mahina . ʻO ka pahuhopu lōʻihi o kēia lāʻau lapaʻau, ʻo ia ke kāohi i ka holomua o ka maʻi. No laila, he mea nui loa ka makaʻala i kāu mau hōʻailona.

E haʻi i kāu kauka e makaʻala i kēia mau mea:

• ʻO ka hiki ke hele me ke kōkua ʻole
• ʻO ka mae a me ke kani ʻana i nā lālā
• Nā pane kino
• Ke kāohi nei i ke koko i ke kū ʻana

ʻOiai inā ʻaʻole ʻoe e ʻike koke i kahi loli, mai poina e loaʻa i kāu mau lāʻau pale i ka manawa kūpono. Hiki i kāu kauka ke hana i nā hoʻokolohua koko like ʻole, nā scan, a i ʻole nā ​​​​hoʻokolohua kino e nānā i kāu holomua.

Nā hopena ʻaoʻao a pehea e mālama ai iā lākou?

ʻO nā hopena ʻaoʻao maʻamau i ʻike ʻia me Amvuttra:

• ʻEha ma nā lima a i ʻole nā ​​wāwae
• ʻEha hui
• Paʻakikī ka hanu ʻana

Eia kekahi, hiki iā Amvuttra ke hōʻemi i kāu mau pae wikamina A. No laila, e hana kāu kauka i kahi hoʻāʻo koko e nānā i kāu mau pae wikamina A ma mua a i ka wā o ka mālama ʻana. Inā ʻike ʻoe i kekahi mau loli i kou ʻike, ʻoiai nā pilikia ʻike pō , e hoʻomaopopo koke i kāu kauka.

ʻAʻole kēia wale nō nā hopena ʻaoʻao hiki ke loaʻa. Inā loaʻa iā ʻoe kekahi mau hōʻailona hou e hoʻoluhi ai iā ʻoe, e haʻi koke i kāu kauka.

Hiki paha nā pilikia me nā lāʻau lapaʻau ʻē aʻe?

ʻAʻole ʻike ʻia ʻo Amvuttra e hoʻopili nui me nā meaʻai, nā mea inu, a i ʻole nā ​​​​lāʻau lapaʻau ʻē aʻe. Eia nō naʻe, ʻoi aku ka maikaʻi o ka haʻi ʻana i kāu kauka e pili ana i nā lāʻau lapaʻau āpau, nā huaora, nā huahana lāʻau lapaʻau, a me nā mea hoʻohui āu e lawe nei.