Ke manaʻo nei ʻoe i kekahi manawa e luhi ana kou mau maka i ka hala ʻana o ke ao, ua hū kou alelo i kāu ʻōlelo ʻana, a i ʻole e mae ana kou mau lālā? ʻAʻole paha kēia ma muli o ka luhi wale nō. I kēia lā, ke kamaʻilio nei mākou e pili ana i kahi kūlana kūikawā i kapa ʻia ʻo ' Myasthenia Gravis ' e hoʻoulu ai i kēlā mau hōʻailona a me kahi lāʻau hou i hoʻohana ʻia no ia mea. He mea nui loa ka makaʻala i kēia.
He aha maoli ka Myasthenia Gravis?
I ka ʻōlelo maʻalahi, ʻo ka myasthenia gravis kahi maʻi mau loa kahi e hoʻouka hewa ai ka ʻōnaehana pale ponoʻī o ko mākou kino, ʻo ia hoʻi ka ʻōnaehana pale, i kā mākou mau hunaola olakino ponoʻī. Ua kapa ʻia kēia he maʻi autoimmune.
E noʻonoʻo, hele kahi leka i hoʻouna ʻia mai ko mākou lolo ma o nā aʻalolo a hiki i kahi ʻiʻo, a laila hana. Ua hōʻino ʻia ka hui neuromuscular ma waena o ke aʻalolo a me ka ʻiʻo i kēia maʻi. Hiki i kekahi mau antibodies i hana ʻia e kā mākou ʻōnaehana pale i kēia hui a ālai i ke kahe o nā leka. ʻO ka hopena , hoʻomaka mālie ka ʻiʻo e nāwaliwali .
ʻO nā ʻano nui ʻelua o nā antibodies e hoʻokumu ai i kēia pilikia, ʻo ia ka anti- acetylcholine receptor (AChR) a me ka anti-muscle-specific tyrosine kinase (MuSK) . Na kāu kauka e wehewehe i kēia mau mea iā ʻoe.
He aha nā hōʻailona maʻamau o kēia maʻi?
Hiki ke ʻokoʻa kēia mau hōʻailona mai kēlā kanaka a kēia kanaka. Eia kekahi, ʻo ka nui o kāu hoʻohana ʻana i ka ʻiʻo, ʻoi aku ka nāwaliwali. Hōʻike ka papa ma lalo nei i kekahi o nā hōʻailona maʻamau.
| Hōʻailona | Wehewehena |
|---|---|
| Nā lihilihi maka e hāʻule ana | Ke kulou ʻana o kekahi a i ʻole nā maka ʻelua me ke kāohi ʻole ʻia. Hiki i kekahi poʻe ke ʻike i ʻelua. |
| Ka loli ʻana o ka helehelena | ʻO ka hoʻonāwaliwali ʻia o nā ʻiʻo ma ka maka a me ka ʻāwae hiki ke hoʻololi i nā mea e like me ka minoʻaka a me ka hōʻike ʻana i ka huhū. |
| Ka nāwaliwali ma nā lima, nā wāwae, a me nā manamana lima | Ka paʻakikī e hana i nā hana o kēlā me kēia lā e like me ka hāpai ʻana i kahi mea, ka paʻi ʻana i ka lauoho, a i ʻole ka hele wāwae ʻana. |
| Paʻakikī ke ale ʻana | Manaʻo e like me ʻoe e ʻū ana i ka wā e moni ai i ka meaʻai a mea inu paha. |
| Paʻakikī i ka ʻōlelo ʻana | Nā loli i ka leo i ka wā e ʻōlelo ai, me he mea lā e ʻōlelo ana ʻoe ma kou ihu, a i ʻole ke ʻōlelo ʻana me he mea lā e paʻa ana ke alelo. |
Pehea e hana ai ka lāʻau lapaʻau hou ʻo Rystiggo?
He lāʻau lapaʻau hou ʻo Rystiggo (Rozanolixizumab-noli) i ʻāpono ʻia no ka mālama ʻana i ka myasthenia gravis. No loko ia o kahi papa o nā lāʻau lapaʻau i kapa ʻia ʻo neonatal Fc receptor (FcRn) blockers.
I kēia manawa, e nānā kākou pehea e hana ai kēia. E like me kaʻu i ʻōlelo ai ma mua, ʻo ke kumu o kēia maʻi nā antibodies ʻino (AChR a me MuSK) i loko o ko kākou koko. ʻO ka mea a Rystiggo e hana ai, ʻo ia ke kuhikuhi i kēia mau antibodies ʻino a hoʻolalelale i ko lākou wehe ʻana mai ko kākou kino.
I ka ʻōlelo maʻalahi, hana kēia lāʻau lapaʻau e like me kahi kānana e hoʻomaʻemaʻe i ko mākou koko a hoʻemi i ka nui o nā antibodies maikaʻi ʻole e hoʻoulu ai i ka maʻi.
Ke emi ka nui o kēia mau antibodies, emi ka hoʻopilikia ʻana i ka hoʻoili hōʻailona ma waena o nā aʻalolo a me nā ʻiʻo. ʻO ka hopena, piʻi hou ka ikaika o nā ʻiʻo a ua kāohi ʻia nā hōʻailona.
He maikaʻi anei kēia lāʻau lapaʻau no nā kānaka a pau?
ʻAʻole. Ua ʻae wale ʻia ʻo Rystigmo no ka hoʻohana ʻana i nā poʻe maʻi makua me ka myasthenia gravis i hoʻāʻo ʻia no nā antibodies iā AChR a i ʻole MuSK i loko o ko lākou koko. ʻO ka poʻe i loaʻa ʻole kēia mau antibodies, ʻaʻole paha lākou e pōmaikaʻi mai kēia lāʻau lapaʻau. No laila, na kāu kauka e hoʻoholo inā kūpono kēia lāʻau iā ʻoe.
Pehea e hāʻawi ʻia ai ka lāʻau lapaʻau a he aha nā hopena ʻaoʻao?
ʻO ka maʻamau, hāʻawi ʻia kēia lāʻau lapaʻau ma ke ʻano he inikini i loko o ka ʻiʻo subcutaneous ma kahi haukapila a i ʻole ke keʻena lapaʻau. ʻO ka mea maʻamau, hāʻawi ʻia kēia ma ka ʻāpana ma lalo o ka pihi ʻōpū.
- Kaʻina hana lapaʻau:ʻO ka maʻamau, hāʻawi ʻia kēia lāʻau pale i hoʻokahi manawa i ka pule no 6 mau pule. Ua kapa ʻia kēia he pōʻaiapuni lapaʻau. Ma hope o kēlā, hiki iā ʻoe ke hele me ka ʻole o ka lāʻau lapaʻau no kekahi manawa a hoʻomaka i kahi pōʻaiapuni hou inā pono. Na kāu kauka kēia e hoʻoholo.
- Akahele: E mālama ʻia ʻoe ma lalo o ka mākaʻikaʻi lapaʻau no kahi o 15 mau minuke ma hope o ka hoʻokomo ʻana, no ka mea, hiki ke loaʻa nā hopena alerika i kekahi manawa.
| Ka pilikia/hopena ʻaoʻao | He aha e hana ai a me ka mea e ʻike ai |
|---|---|
| Nā kūlana i ka wā e pono ai ʻoe e hoʻomaopopo koke i kāu kauka | |
| Nā maʻi ʻeha | Inā loaʻa iā ʻoe nā hōʻailona e like me ke kuni, ka ʻeha o ke kino, ke kuni, ka huʻa, ka paʻakikī o ka hanu ʻana, a i ʻole ka maʻi pākī, e haʻi koke aku i kāu kauka ma mua a i ka wā o ka mālama ʻana. Pono paha e hoʻopanee ʻia ka mālama ʻana a hiki i ka pau ʻana o ka maʻi. |
| Nā hopena ʻaoʻao maʻamau | |
| ʻEha poʻo | He mea liʻiliʻi kēia maʻamau. Inā koʻikoʻi a hoʻomau paha, e haʻi i kāu kauka. |
| Ka luaʻi a me ka maʻi pākī | He mea maʻamau kēia i nā pule mua o ka lāʻau lapaʻau. E inu i ka wai he nui a ʻai i nā meaʻai palalulu (laiki, maiʻa). Inā hoʻomau ia, e haʻi i kāu kauka. |
| Nā hopena ma ka wahi inikini | Hiki ke loaʻa ka ʻulaʻula, ka maneʻo, a me ka pehu ma kahi i inikini ʻia. Hiki ke hoʻēmi ʻia kēia ma ka hoʻololi ʻana i kahi i inikini ʻia ma mua o ka inikini ʻana ma kahi hoʻokahi i kēlā me kēia manawa. |
Hiki paha ke loaʻa nā pilikia me nā lāʻau lapaʻau a me nā lāʻau pale ʻē aʻe?
ʻAe, he mea nui loa kēlā.
- Nā lāʻau pale: ʻAʻole hiki ke hāʻawi ʻia kekahi mau lāʻau pale ma mua a i ka wā o ka mālama ʻana me Rystiggo. No laila, e haʻi mua i kāu kauka e pili ana i nā lāʻau pale āu e loaʻa nei.
- Nā lāʻau lapaʻau ʻē aʻe: ʻO nā lāʻau lapaʻau ʻē aʻe āu e lawe nei, ʻoiai nā lāʻau lapaʻau e pili ana i ka pale ʻana e like me Intravenous Immunoglobulin (IVIg) , a me nā monoclonal antibodies , hiki ke launa pū me Rystiggo.
No laila, he mea nui e haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau āpau āu e lawe ai (me nā huaora a me nā huahana lāʻau) me ka hūnā ʻole i kekahi mea.
Pehea ʻoe e ʻike ai inā e hana ana ka lāʻau lapaʻau?
I loko o kekahi mau pule o ka hoʻomaka ʻana iā Rystiggo, e hoʻomaka ʻoe e ʻike i kou mau ʻiʻo e ikaika aʻe ana a me kou mau hōʻailona e hoʻomaikaʻi ana. Eia nō naʻe, inā e hoʻomaikaʻi ana kou mau hōʻailona, mai hoʻōki i ka lawe ʻana i ka lāʻau lapaʻau me ka ʻole o ke aʻo ʻana a kāu kauka. ʻO ka hana ʻana pēlā e hoʻi hou mai ai kou mau hōʻailona. E kamaʻilio mau me kāu kauka e pili ana i kou kūlana.
Leka Lawe-Home
- ʻO ka Myasthenia Gravis kahi maʻi kahi e hoʻouka ai ko mākou ʻōnaehana pale ponoʻī i ko mākou mau ʻiʻo.
- He lāʻau lapaʻau hou ʻo Rystigmo no kēia maʻi. Kōkua ia i ka wehe ʻana i nā antibodies ʻino e hoʻoulu ai i ka maʻi mai ke kino.
- ʻAʻole kūpono kēia lāʻau lapaʻau no nā kānaka a pau. Na kāu kauka e hoʻoholo inā kūpono kēia iā ʻoe ma ka nānā ʻana inā he mau antibodies AChR a MuSK paha kou i loko o kou koko.
- Inā loaʻa iā ʻoe nā hōʻailona o ka maʻi e like me ke kuni a me ke kuni i ka wā o ka mālama ʻana, e hoʻomaopopo koke i kāu kauka.
- He mea nui loa e haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau ʻē aʻe āu e lawe nei.
- Mai ho'ōki i ka ho'ōki ʻana i nā lāʻau lapaʻau i kuhikuhi ʻia me ka ʻole o ke aʻo ʻana a ke kauka no kekahi kumu.
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