Manaʻolana hou no ka poʻe me Myasthenia Gravis (MG): E aʻo kākou e pili ana i ka lāʻau Zilbrysq (Zilucoplan)!

Loaʻa iā ʻoe kahi maʻi i kapa ʻia ʻo Myasthenia Gravis (MG)? A laila ua ʻike maopopo paha ʻoe i ka nui o ka pilikia o kēia nāwaliwali o nā ʻiʻo, nā maka e hāʻule ana, ka paʻakikī o ka ʻōlelo ʻana, a me ke ale ʻana i kou ola. Pono ʻoe e hoʻohana i nā lāʻau lapaʻau like ʻole e kāohi i kēia maʻi. Akā hoʻokahi mea āu e hauʻoli ai, ʻo ia ka mea i hoʻolauna ʻia mai nei nā lāʻau lapaʻau hou e mālama ai i kēia maʻi. I kēia lā, e kamaʻilio mākou e pili ana iā Zilbrysq, kahi inikini hou e hiki ke hoʻohana ʻia ma ka home.

ʻO ka mea mua, e nānā kākou i ke ʻano o ka Myasthenia Gravis (MG).

I ka ʻōlelo maʻalahi, he maʻi autoimmune ʻo Myasthenia Gravis (MG). ʻO ke ʻano kēia, hoʻomaka hewa ka ʻōnaehana pale o ko mākou kino ponoʻī, a i ʻole ka ʻōnaehana pale, e hoʻouka i kā mākou mau hunaola olakino ponoʻī.

E noʻonoʻo e hoʻouna ana ko kākou lolo i kahi leka i kahi ʻiʻo e 'ʻaelike'. Hele kēia leka ma ke aʻalolo. ʻO kahi e pili ai ke aʻalolo a me ka ʻiʻo e like me kahi 'junction'. Kāhea mākou i kēia ʻo ka neuromuscular junction. Ma kēia junction, aia nā 'receptors' kūikawā e loaʻa ana ka leka aʻalolo. I ka MG, hoʻouka kā mākou ʻōnaehana pale i kēia mau receptors i kapa ʻia ʻo 'acetylcholine receptors'. A laila ʻaʻole i loaʻa pono ka leka mai ka lolo e ka ʻiʻo. ʻO ka hopena, luhi koke ka ʻiʻo a nāwaliwali.

ʻAʻole ʻike nā kānaka a pau me MG i nā hōʻailona like. Loaʻa i kekahi poʻe ka hoʻomaka koke ʻana o nā hōʻailona , ​​aʻo kekahi poʻe e piʻi mālie ana nā hōʻailona i loko o nā makahiki. I kekahi manawa aia paha nā manawa o ka hoʻomaha (ke nalo aku nā hōʻailona).

Pehea e hana ai ka lāʻau lapaʻau ʻo Zilbrysq?

ʻO ka pahuhopu nui o ka mālama ʻana iā MG, ʻo ia ka hoʻihoʻi ʻana i ka hoʻoili ʻana o nā leka aʻalolo ma o ka mea loaʻa acetylcholine. Hoʻohana pinepine ʻia nā lāʻau lapaʻau e like me pyridostigmine (Mestinon), nā steroid e like me prednisone, a me nā immunosuppressants e hana i kēia.

No kahi papa lāʻau lapaʻau hou ʻo Zilbrysq e hana ana ma ke ʻano ʻokoʻa. Kāhea mākou i kēia mau mea he 'mea hoʻopale hoʻopihapiha'.

E hoʻomanaʻo i kaʻu ʻōlelo ʻana e hoʻouka ana kā mākou ʻōnaehana pale i ko mākou mau ʻiʻo? Aia kekahi mea i kapa ʻia ʻo ke "ala hoʻopihapiha" e pāʻani ana i kahi kuleana koʻikoʻi i kēia kaʻina hana hoʻouka. ʻO ka mea a Zilbrysq e hana ai, ʻo ia ke ālai i ka hana o kēia ʻōnaehana hoʻopihapiha. A laila hoʻemi ka ʻōnaehana pale i nā hoʻouka ʻino i nā mea loaʻa. ʻO ka hopena, hoʻomaka nā leka aʻalolo e hele hou i nā ʻiʻo, a hoʻomaikaʻi hou ka ikaika o nā ʻiʻo.

Hiki ke hoʻohana ʻia ʻo Zilbrysq e nā mea a pau me MG?

ʻAʻole, ʻaʻole hiki i nā kānaka a pau. Ua ʻae wale ʻia kēia lāʻau lapaʻau no ka poʻe i loaʻa kahi antibody kikoʻī i kapa ʻia ʻo "antibody receptor anti-acetylcholine" i loko o ko lākou koko. Loaʻa i ka hapa nui o ka poʻe me MG (ma kahi o 80%-90%) kēia antibody. Akā inā ʻaʻohe ou kēia i loko o kou koko, ʻaʻole paha e kōkua nui kēia lāʻau lapaʻau. No laila, ma mua o kou hoʻomaka ʻana e lawe i kēia lāʻau lapaʻau, e hana kāu kauka i kahi hoʻāʻo koko kūikawā e nānā inā loaʻa iā ʻoe kēia antibody.

Pehea ʻoe e hoʻohana ai i kēia lāʻau lapaʻau?

He lāʻau lapaʻau wai ʻo Zilbrysq i hoʻokomo ʻia ma lalo o ka ʻili i kēlā me kēia lā. Hiki ke hoʻokomo ʻia i loko o ka ʻūhā, ka ʻōpū, a i ʻole ke kua o ka lima luna.

• Ka mālama ʻana: Pono e mālama ʻia kēia lāʻau lapaʻau i loko o ka pahu hau.
• Ma mua o ka hoʻohana ʻana: E lawe i ka lāʻau pale mai loko mai o ka pahu hau 30-45 mau minuke ma mua o ke komo ʻana a e hoʻokuʻu iā ia i ka mahana o ka lumi. E hōʻemi kēia i ka ʻoluʻolu ʻole i ka wā o ke komo ʻana.
• Hoʻomaʻamaʻa: Ke loaʻa mua iā ʻoe kēia lāʻau lapaʻau, e hōʻike kāu kauka a kahu maʻi paha iā ʻoe pehea e hoʻokomo pololei ai. He mea nui loa e hoʻokomo i ka lāʻau lapaʻau e like me ke kuhikuhi ʻana e loaʻa ai ka nui kūpono. Inā he mea āu e maopopo ʻole ai, e nīnau hou i kāu kauka.

Nā mea kūikawā e pono ai ʻoe e ʻike ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau

He ʻāpana koʻikoʻi loa kēia, no laila e mālama pono.

Hiki i kēia lāʻau lapaʻau ke hoʻonui i ka pilikia o kekahi mau maʻi koʻikoʻi, ʻoiai nā maʻi meningococcal. Ma muli o kēia pilikia, loaʻa wale kēia lāʻau lapaʻau ma o kahi papahana palekana kūikawā i kapa ʻia ʻo ka papahana Zilbrysq REMS. Pono ʻoe a me kāu kauka e kākau inoa i kēia papahana.

Ma ke ʻano he ʻāpana o kēia papahana, e aʻo aku kāu kauka iā ʻoe e pili ana i nā maʻi meningococcal, pehea e pale aku ai iā lākou, pehea e ʻike ai i nā hōʻailona, ​​a me ke koʻikoʻi o ka ʻimi koke ʻana i ke kōkua lapaʻau inā loaʻa nā hōʻailona.

• Nā Pale ʻAna: I mea e hōʻemi ai i ka pilikia o ka maʻi, e hōʻoia kāu kauka ua loaʻa iā ʻoe nā pale meningococcal ma ka liʻiliʻi he ʻelua pule ma mua o ka hoʻomaka ʻana iā Zilbrysq. Inā pono ʻoe e hoʻomaka koke i ka lāʻau lapaʻau a ʻaʻole i pale ʻia, pono ʻoe e lawe i nā antibiotics a hiki i ka hopena o ka pale ʻana.
• Kāleka Palekana: E hāʻawi ʻia ʻoe i kahi 'Kāleka Palekana Maʻi' kūikawā. Pono ʻoe e mālama i kēia kāleka me ʻoe i nā manawa a pau. He mea nui e mālama pū me ʻoe i kou wā e lawe ana i ka lāʻau lapaʻau, a no ʻelua mahina ma hope o ka hoʻōki ʻana i ka lāʻau lapaʻau. Hiki iā ʻoe ke hōʻike i kēia kāleka i kekahi kauka ʻē aʻe e mālama iā ʻoe.

Nā hopena ʻaoʻao a pehea e mālama ai iā lākou?

E like me nā lāʻau lapaʻau a pau, hiki iā Zilbrysq ke hana i kekahi mau hopena ʻaoʻao, akā hiki ke mālama ʻia ka hapa nui o lākou.

Pehea ka wikiwiki e hiki ai iaʻu ke manaʻo i nā hopena?

Inā kūpono ʻo Zilbrysq iā ʻoe, e ʻike paha ʻoe i kahi hoʻomaikaʻi ʻana i kāu mau hōʻailona i loko o ka pule mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau. ʻIke ka hapa nui o ka poʻe i nā hopena maikaʻi loa i loko o ka mahina mua.

Inā ʻaʻole ʻoe e ʻike i kekahi hoʻomaikaʻi ʻana i kāu mau hōʻailona ma hope o ka lawe ʻana i ka lāʻau lapaʻau no hoʻokahi a ʻelua paha mahina, e kamaʻilio me kāu kauka. E kamaʻilio ʻo ia me ʻoe e pili ana i nā koho lapaʻau ʻē aʻe.