Manaʻolana hou no ka poʻe me Friedreich Ataxia: E aʻo kākou e pili ana i ka lāʻau Skyclarys!

He maʻi laha ʻole ʻo Friedreich Ataxia, he maʻi hoʻoilina e hoʻopilikia nui ana i kā mākou ʻōnaehana nerve. ʻOiai hiki ke ʻike ʻia nā hōʻailona i ka wā ʻōpiopio, ʻike mākou i ka paʻakikī o ke ola ʻana me ia. He mea paʻakikī ke hōʻike i ke kaumaha a me ka hopohopo e hele mai me ka nalowale mālie ʻana o ke kaohi o ko mākou kino. Eia naʻe, me ka holomua o ka ʻepekema, ke loaʻa nei iā mākou ka manaʻolana hou e hana ai me ia mau maʻi. ʻO ia ke ʻano o ka manaʻolana hou a mākou e kamaʻilio nei i kēia lā.

ʻO ka mea mua, e nānā kākou i ke ʻano o Friedreich Ataxia.

I ka ʻōlelo maʻalahi, ʻo ka Friedreich's ataxia (FA) kahi maʻi genetic e hōʻino ana i kā mākou ʻōnaehana nerve. Hoʻemi mālie kēia i ka hiki ke kāohi i ko mākou mau ʻiʻo. I ka holomua ʻana o ka maʻi, hiki i nā hōʻailona ke ʻoi aku ka ʻino.

E nānā kākou i nā hōʻailona i ʻike pinepine ʻia.

He aha kēia lāʻau lapaʻau hou i kapa ʻia ʻo Skyclarys?

ʻO Skyclarys ʻo Friedrich i ka makahiki 2023ʻO ka lāʻau lapaʻau mua i ʻāpono ʻia no ka ataxia (FA). Loaʻa iā ia ka mea hana nui ʻo `omaveloxolone`.

Ua hōʻike ʻia nā haʻawina hiki i nā Skyclarys ke hoʻomaikaʻi i ka hana aʻalolo a hoʻolohi i ka holomua o ka maʻi.

Pehea ka hopena o kēia lāʻau lapaʻau i ke kino?

ʻOiai he mea ʻepekema iki kēia, e hoʻomaopopo maʻalahi kākou. Aia kahi protein i kapa ʻia ʻo 'Nrf2' e pale ana i nā cell i loko o ko kākou kino. E noʻonoʻo iā ia e like me kahi ʻōnaehana pale i loko o ko kākou kino. I loko o ke kanaka me FA, ʻaʻole hana pono kēia ʻōnaehana pale 'Nrf2'. No laila, loaʻa ke kaumaha pono ʻole a me ka mumū i loko o nā cell, kahi e hōʻino ai i nā cell.

Hana ʻo Skyclarys ma ka hoʻoulu hou ʻana i ka ʻōnaehana pale `Nrf2` i nāwaliwali. ʻO ia hoʻi, "hoʻoikaika" ia iā ia. ʻO ka hopena, ʻo nā mitochondria, e like me nā mea kanu mana e hāʻawi ana i ka ikehu i nā cell, e hoʻomaka e hana maʻamau. Hoʻemi kēia i ka hōʻino ʻana i nā cell.

Pehea e pono ai iaʻu ke hoʻohana i ka lāʻau lapaʻau?

He capsule waha ʻo Skyclarys. Pono ʻoe e makaʻala i kēia mau mea i ka wā e hoʻohana ai.

• I ka lā, pono ʻoe e lawe i ʻekolu mau capsules he 50 milligrams.
• Pono e lawe ʻia kēia ma ka ʻōpū ʻole , ʻo ia hoʻi, ma ka liʻiliʻi he hola ma mua o ka ʻai ʻana.
• Pono e ale holoʻokoʻa ʻia ke kapule. ʻAʻole pono e kuʻi ʻia a nau ʻia paha.
• Inā pilikia koke ʻoe i ke ale ʻana i ke capsule, hiki iā ʻoe ke wehe mālie i ke capsule, e hoʻohui i ka pauka lāʻau i loko i ʻelua punetēpē o ka ʻāpala, e kāwili maikaʻi, a ale koke iā ia a pau.
• Mai hoʻohuihui i kēia lāʻau lapaʻau me ka waiū a i ʻole ka wai ʻalani .
• Eia kekahi, ʻaʻole hiki iā ʻoe ke wehe i ka capsule a hāʻawi i ka lāʻau lapaʻau i kahi mea e loaʻa ana ka meaʻai ma o kahi ʻōmole hānai enteral.
• Inā ʻoe e poina i kahi lāʻau lapaʻau, e hōʻalo i kēlā lāʻau lapaʻau a lawe i kāu lāʻau lapaʻau aʻe i ka manawa i hoʻonohonoho ʻia. Mai lawe i kahi lāʻau lapaʻau pālua e hoʻopiha no kahi lāʻau lapaʻau i poina.

Nā hopena ʻaoʻao a pehea e mālama ai iā lākou?

E like me nā lāʻau lapaʻau āpau, ʻo SkyclarysHiki ke loaʻa nā hopena ʻaoʻao. ʻO nā hopena ʻaoʻao maʻamau:

• Hoʻonui ʻia nā enzymes ate
• ʻEha poʻo
• Ka luaʻi
• ʻEha ʻōpū
• Luhi
• Ka maʻi pākī

No kēia mau mea, pono ʻoe e hopohopo nui e pili ana i nā enzymes akepaʻa kiʻekiʻe . ʻO ke ʻano kēia, aia paha kou akepaʻa ma lalo o kekahi ʻano kaumaha a hōʻino paha. No kēia kumu, e nānā pinepine kāu kauka i kēia ma ka hana ʻana i ke koko. Inā ʻike ʻoe i kekahi o nā hōʻailona ma lalo nei, e haʻi koke i kāu kauka.

• Ka luaʻi a i ʻole ka luaʻi
• Melemele o ka ʻili a i ʻole nā ​​maka
• ʻEha ma ka ʻaoʻao ʻākau o luna o ka ʻōpū

Hiki i nā mea e like me kēia ke kōkua i ka hoʻokele ʻana i nā hopena ʻaoʻao ʻē aʻe:

• No ke poʻo ʻeha: E inu i ka wai he nui, e ʻai i nā meaʻai momona, a e hiamoe pono. Ke pā mai ke poʻo ʻeha, e hoʻomaha i loko o kahi lumi anuanu a pouli.
• ʻO ka luaʻi, ka ʻeha o ka ʻōpū, a me ka maʻi kahe: E ʻai i nā meaʻai liʻiliʻi ma mua o nā meaʻai nui. E ʻai mālie a nau pono i kāu meaʻai. E pale i ka caffeine, ka waiʻona, a me nā mea inu kalapona. Inā loaʻa iā ʻoe ka maʻi kahe, pono ʻoe e noho hydrated. He mea maikaʻi ka inu wai, nā sopa, a me ka wai ʻalani. E ʻai i nā meaʻai palalulu e like me ka laiki, ka ʻuala, ka berena, a me ka maiʻa. Inā koʻikoʻi kāu maʻi kahe, e kamaʻilio me kāu kauka e pili ana i ka lāʻau kūpono.
• Luhi: E pale i ka hoʻokele kaʻa a i ʻole ka hana ʻana i kekahi mea e pono ai ka makaʻala a hiki i kou ʻike pono ʻana i ke ʻano o ka hopena o kēia lāʻau lapaʻau iā ʻoe.

Hiki paha nā pilikia me nā lāʻau lapaʻau ʻē aʻe?

ʻAe, he mea nui loa kēia. Hiki i nā Skyclarys ke launa pū me nā lāʻau lapaʻau ʻē aʻe.

• Nā lāʻau lapaʻau ʻē aʻe: Hoʻopili kekahi mau lāʻau lapaʻau me kahi enzyme i loko o ko mākou kino i kapa ʻia ʻo 'CYP3A4'. Inā ʻoe e lawe ana i ia ʻano lāʻau lapaʻau, pono paha i kāu kauka ke hoʻololi i ka nui o Skyclarys a hoʻololi paha iā ʻoe i kahi lāʻau lapaʻau ʻē aʻe. No laila, e haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau āpau āu e lawe nei (me nā huaora a me nā huahana lāʻau).
• Nā lāʻau hoʻomalu hānau: He mea nui loa kēia. ʻAʻole paha e maikaʻi loa nā lāʻau hoʻomalu hānau hormonal ke lawe pū ʻia me Skyclarys. ʻO ke ʻano kēia he pilikia o ka hāpai ʻana. No laila, pono ʻoe e hoʻohana i kahi ʻano hoʻomalu hānau ʻaʻole hormonal, e like me nā condom, ʻoiai e lawe ana iā Skyclarys a no 28 mau lā ma hope o ka hoʻōki ʻana i ka lāʻau.
• ʻAila a me ka wai ʻaila: E pale i ka inu ʻana i ka wai ʻaila a wai ʻaila paha i ka wā e lawe ana iā Skyclarys. Hiki i kēia ke hoʻonui i nā hopena o ka lāʻau lapaʻau a hoʻonui i nā hopena ʻaoʻao.

ʻO ka mea hope loa, pono ʻoe a me kāu neurologist e hoʻoholo pū inā kūpono kēia lāʻau lapaʻau iā ʻoe. He lāʻau lapaʻau wale nō kēia i loaʻa i ke kauka, loaʻa wale nō ma nā hale kūʻai lāʻau lapaʻau kūikawā. Na kāu kauka e hoʻonohonoho i nā mea e pono ai.