He aha ka MOGAD? E aʻo kākou e pili ana i kēia maʻi e hōʻino ana i ko kākou mau ʻāpana kino ponoʻī!

Ua noʻonoʻo paha ʻoe pehea e hiki ai i ko kākou ʻōnaehana pale kino, e like me ke koa e pale ana iā kākou mai nā maʻi, ke hele hewa i kekahi manawa a hoʻouka i ko kākou mau ʻāpana olakino ponoʻī? ʻO ka mea pōʻino, he maʻi kēia i hoʻokumu ʻia e kahi pilikia e kū mai ana i loko o ko kākou kino. ʻOiai paha he mea paʻakikī iki kēia, e mālama kākou i ka maʻalahi no ka mea he mea nui e makaʻala i ia mea.

He aha maoli ka MOGAD?

I ka ʻōlelo maʻalahi, he maʻi autoimmune ʻo MOGAD. I kēia manawa ke noʻonoʻo nei paha ʻoe i ke ʻano o ia mea. ʻO ka hana nui o ka ʻōnaehana pale o ko mākou kino, ʻo ia ke pale iā mākou mai nā maʻi ma o ke kaua ʻana i nā germs, viruses, a me nā bacteria e hele mai ana mai waho. Kōkua ʻia kēia e kahi ʻano protein kūikawā i kapa ʻia ʻo antibodies . Akā i kekahi manawa, hele hewa kēia ʻōnaehana pale. A laila hoʻomaka lākou e ʻike i kā mākou mau cell olakino a me nā ʻiʻo e like me nā ʻenemi a hoʻouka iā lākou. ʻO ia ka mea a mākou e kapa nei he maʻi autoimmune.

ʻO ia ka mea e hana ʻia ma MOGAD. Maanei, hoʻouka kā mākou ʻōnaehana pale i ka uhi pale a puni kā mākou ʻōnaehana nerve waena (CNS) , ʻo ia hoʻi ka lolo, ke kaula spinal, a me nā aʻalolo optic i loko o ko mākou mau maka. Ua kapa ʻia kēia uhi pale ʻo myelin . E noʻonoʻo e like me ka ʻūpā plastik a puni kahi uea uila. Mālama kēia myelin i nā olonā nerve a kōkua i nā hōʻailona nerve e hele mālie.

No laila, ke hele mai nā antibodies a hōʻino i kēia myelin, kapa mākou ia he demyelination . E like me ka wā e hōʻino ʻia ai ka uhi plastik ma kēlā uea, ʻaʻole e hoʻā pono ke kukui, ke hōʻino ʻia ka myelin, ʻaʻole e hele pono nā leka mai ka lolo a i ke koena o ke kino. ʻO ia ke kumu e hoʻoulu ai ʻo MOGAD i nā hōʻailona like ʻole.

ʻO nā hōʻailona maʻamau e komo pū ana me ka nalowale o ka ʻike a i ʻole ka ʻike pōwehiwehi (Optic Neuritis) , nāwaliwali o nā ʻiʻo (Transverse Myelitis) , a me ka nalowale o ke kaulike (Acute Disseminated Encephalomyelitis - ADEM) . Inā kāhea ke kauka iā ʻoe ma kēia mau inoa, e ʻike ʻoe i ko lākou manaʻo.

Aia kekahi mau ʻano nui o MOGAD?

ʻAe, hiki iā mākou ke ʻike i ʻelua ʻano nui o MOGAD:

1. Monophasic MOGAD: I kēia hihia, hoʻokahi wale nō ʻike ʻoe i nā hōʻailona. ʻO ia hoʻi, ke loaʻa iā ʻoe ka maʻi a mālama ʻia, ʻaʻole e ʻike hou ʻia nā hōʻailona.

2. MOGAD Hoʻi Hou: He ʻokoʻa iki kēia. Hiki ke nalowale nā ​​​​hōʻailona no kekahi manawa (kapa mākou i kēia he remission) , akā a laila hoʻi hou. Me he mea lā he maʻi mau loa ia.

He maʻi laha ʻole anei ʻo MOGAD?

He aha ka manaʻo maoli o ka MOGAD?He maʻi demyelinating kakaikahi . Akā i ka piʻi ʻana o ka ʻike i ka maʻi, manaʻoʻiʻo nā kauka e piʻi aʻe ana ka nui o nā hihia i ka wā e hiki mai ana. Ma muli o ka ʻikepili o kēia manawa, ua manaʻo ʻia he hoʻokahi a ʻekolu paha kānaka i loko o hoʻokahi miliona mau kānaka e loaʻa i ka maʻi i kēlā me kēia makahiki. ʻO ia hoʻi , ʻaʻole ia he maʻi maʻamau loa.

He aha nā hōʻailona o MOGAD?

Hiki i nā hōʻailona o MOGAD ke hoʻopili i nā ʻāpana he nui o kou kino. ʻO nā mea nui nā maka, ke kaula spinal (ke kaula nerve i loko o ka iwi kuamoʻo), a me ka lolo.

Nā hōʻailona e pili ana i nā maka (Optic Neuritis)

Kāhea mākou i kēia kūlana ʻo Optic Neuritis . Hiki iā ia ke hoʻopilikia i hoʻokahi a i ʻole nā ​​​​maka ʻelua.

• ʻIke pōwehiwehi
• ʻIke pālua
• Pohō hapa a piha paha o ka ʻike
• ʻEha maka , ʻoiai ke neʻe ʻana i kou mau maka
• Pohō ʻike kala

E noʻonoʻo, e nalowale koke ana kou ʻike ma kekahi maka, a i ʻole e lilo nā mea āpau i mea pohihihi. Pēlā ke ʻano o kahi ʻike.

Nā hōʻailona e pili ana i ke kaula spinal (Transverse Myelitis)

Ua kapa ʻia kēia he transverse myelitis . He mumū kēia o ke kaula iwi kuamoʻo.

• Ka nāwaliwali o nā ʻiʻo , hiki paha i ka hiki ʻole ke hele
• ʻO ka nawaliwali a i ʻole ka nalowale o ka ʻike ma kekahi mau ʻāpana o ke kino
• Ka nalowale o ke kaohi ʻana o ka ʻōpū a i ʻole ka ʻōpū mimi (e like me ka hiki ʻole ke paʻa i ka mimi, hiki ʻole ke kaohi i nā neʻe ʻana o ka ʻōpū)
• Ka paʻakikī i ka hoʻokahe piha ʻana i ka mimi
• ʻOʻoleʻa a ʻūlū paha nā ʻiʻo (spasticity)
• He ʻeha ʻoi a hou paha a i ʻole he manaʻo ʻūlū ma ka ʻāʻī, ke kua, a i ʻole ka ʻōpū .

Ua like kēia me ka hōʻino ʻana i ke kaula nui e lawe ana i nā leka i loko o ko mākou kino.

Nā hōʻailona e pili ana i ka lolo (ADEM)

Kāhea mākou i nā hōʻailona e hoʻopilikia i ka lolo ʻo Acute Disseminated Encephalomyelitis (ADEM) .

• Ka huikau , me he mea lā e auwana ana kou ʻike
• ʻO ka nalowale o ke kaulike a me ka hoʻonohonoho ʻana , hiki ke luliluli e like me ke kanaka ʻona
• ʻEha poʻo
• Nā loli o ke ʻano , e like me ka huhū a me ka hoʻonāukiuki paha
• Nalowale o ka ʻike
• Nā hōʻailona Epilepsy (Seizures) , ʻo ia hoʻi, nā hopu ʻana.

Hiki i nā hōʻailona MOGAD ke hoʻi hou. ʻO ia hoʻi, aia paha nā manawa me ka ʻole o nā hōʻailona a laila hoʻi koke mai nā hōʻailona (relapse).

He ʻokoʻa anei nā hōʻailona o MOGAD no nā pākeke a me nā keiki?

ʻAe, hiki ke loli iki ke ʻano o ka hōʻike ʻana o nā hōʻailona me ka makahiki.

ʻO ka maʻamau, ke loaʻa i nā keiki ka MOGAD, hoʻopilikia nui ia i ka lolo (ke kūlana ADEM). A laila ʻike pinepine ʻia nā hōʻailona i ʻōlelo ʻia ma mua, e like me ka huikau a me ka nalowale o ke kaulike. I kekahi manawa, hiki ke loaʻa nā pilikia ʻike (Optic Neuritis) i ka manawa like.

Ke loaʻa i nā pākeke ka MOGAD, ʻo ka hapa nui o ia mea e pili ana i ke kaula kuamoʻo (Transverse Myelitis) a me nā maka (Optic Neuritis). No laila, ʻike pinepine lākou i nā hōʻailona e like me ka nāwaliwali, ka mae ʻana o ka ʻili, a me ka ʻike pohihihi.

He aha ke kumu o ka hoʻokumu ʻia ʻana o MOGAD?

ʻO kaʻoiaʻiʻo, ʻaʻole i loaʻa ke kumu kikoʻī o MOGAD . I kēia manawa, ua manaʻoʻiʻo ʻia ʻaʻole kēia he maʻi hoʻoilina a i ʻole he maʻi i hoʻokumu ʻia e kahi kumu genetic. Aia kekahi noiʻi inā hoʻomaka ia ma muli o kahi loli o ka ʻōnaehana pale, e like me ma hope o kahi maʻi viral. Akā, ʻaʻole hiki ke ʻōlelo maopopo ʻia ʻo ia ke kumu.

He aha nā pilikia e hiki ke loaʻa mai ka MOGAD?

ʻO ka hōʻino ʻana i kēlā uhi pale i kapa ʻia ʻo myelin hiki ke loaʻa nā hopena mau loa i ke ʻano o ka hana ʻana o ko mākou kino. ʻO kekahi o nā pilikia e kū mai ana i kekahi manawa:

• Lilo ʻana i makapō loa
• Ka nalowale mau o ka hana ʻōpū a i ʻole ka hana ʻōpū
• Ka maʻi lolo
• ʻEha mau loa
• Luhi mau loa , manaʻo luhi i nā manawa a pau
• ʻO ka hemahema o ka noʻonoʻo , ʻo ia hoʻi ka paʻakikī i ke aʻo ʻana, ka hoʻomanaʻo ʻana, a me ka noʻonoʻo ʻana.

Hiki ke paʻakikī loa ka hoʻokele ʻana i ka noho ʻana me MOGAD wale nō. Ke kū mai nā hōʻailona, ​​hiki iā lākou ke lawe iā ʻoe mai nā mea āu e makemake ai e hana a hoʻolilo iā ʻoe i mea kōkua ʻole. ʻO ka hopena, nui ka poʻe me MOGAD e ʻeha nei hoʻi i nā pilikia olakino noʻonoʻo e like me ke kaumaha. No laila, inā ʻoe e manaʻo nei i kēia ʻano, he mea nui e kamaʻilio me ke kauka e pili ana i ia mea.

Pehea e ʻike ʻia ai ka maʻi MOGAD?

E ʻike ke kauka i ka MOGAD ma ka hana ʻana i kahi hoʻokolohua kino , kahi hoʻokolohua neurological , a me kekahi mau hoʻokolohua kūikawā ʻē aʻe. I ka wā o ka hoʻokolohua, e nīnau ʻo ia e pili ana i kāu mau hōʻailona a me kou mōʻaukala olakino.

ʻO nā hoʻokolohua e kōkua i ka hōʻoia ʻana i ke alo o ka maʻi MOGAD:

• E nānā inā ua piʻi ka nui o nā hunaola koko keʻokeʻo i loko o ke koko (he mea kēia e hana ʻia ke loaʻa ka mumū).
• Inā he mau ʻeha ma ka lolo a i ʻole ke kaula kuamoʻo (hiki ke nānā ʻia kēia mau mea me nā scan MRI).
• Nā kāʻei OligoclonalʻAʻole ʻike pinepine ʻia kēia mau mea ma MOGAD, akā ʻike ʻia i kekahi mau maʻi ʻē aʻe (e.g., multiple sclerosis). Hiki i kēia ke kōkua i ka hoʻokaʻawale ʻana i nā maʻi ʻelua.

ʻO kekahi mau hoʻokolohua e pono ai i ka ʻike ʻana iā MOGAD:

• Nā hoʻāʻo koko: E nānā i nā antibodies e kūʻē pono ana i kahi protein i kapa ʻia ʻo MOG (MOG-IgG antibodies).
• Hoʻokolokolo ʻike: E nānā inā he mumū o ke aʻalolo optic.
• ʻO ke kī ʻana o ka lumbar: Pili kēia i ka lawe ʻana i kahi liʻiliʻi o ka wai cerebrospinal mai ka iwi kuamoʻo a hoʻāʻo iā ia. Ua kapa ʻia hoʻi kēia he "spinal tap."
• MRI (Magnetic Resonance Imaging) scan: Hiki i kēia ke kiʻi i nā kiʻi kikoʻī o ka lolo a me ke kaula spinal a nānā i nā lesions ma ka myelin.

Hiki ke paʻakikī ke ʻike i ka MOGAD i kekahi manawa, no ka mea, ua like kona mau hōʻailona me nā maʻi neurological ʻē aʻe, e like me ka multiple sclerosis (MS) . No laila, hiki ke lōʻihi ka manawa a me kekahi mau hoʻokolohua e hana i kahi hōʻailona pololei.

I ka makahiki hea e ʻike pinepine ʻia ai ʻo MOGAD?

Ua ʻike ʻia ka hapa nui o nā kānaka me MOGAD i ko lākou mau makahiki he iwakālua a kanakolu paha . Eia nō naʻe, hiki i ke kūlana ke hoʻopilikia i kekahi i kēlā me kēia makahiki. ʻO ka hapa nui o nā keiki e ʻike ʻia ma mua o ka 11 o ko lākou mau makahiki .

Hiki ke ho'ōla loa ʻia ʻo MOGAD?

ʻO ka mea pōʻino, ʻaʻohe lāʻau lapaʻau no MOGAD i kēia manawa . ʻO ia hoʻi, ʻaʻohe lāʻau lapaʻau e hiki ke hoʻopau loa i ka maʻi mai ke kino. Akā, mai makaʻu! Aia nā lāʻau lapaʻau e hiki ke kōkua i ka kaohi ʻana i nā hōʻailona, ​​​​e hōʻemi i ko lākou alapine, a mālama i kahi ola maikaʻi.

Pehea e mālama ʻia ai ʻo MOGAD?

Ke ʻoi koke ka ʻino o nā hōʻailona MOGAD (hoʻouka kaua koʻikoʻi), aia kekahi mau lāʻau lapaʻau i loaʻa:

• ʻO nā steroid, e like me ka methylprednisolone: ​​​​Hāʻawi ʻia kēia mau mea ma ke ʻano intravenous no ʻekolu a ʻelima mau lā. Kōkua kēia i ka hōʻemi koke ʻana i ka mumū a me ka kaohi ʻana i nā hōʻailona.
• Hoʻololi plasma: He ʻano paʻakikī iki kēia o ka lāʻau. Ma kēia, wehe kahi mīkini i ka ʻāpana wai o kou koko i kapa ʻia ʻo plasma, hoʻokaʻawale iā ia mai nā ʻāpana koko, a laila hoʻokomo i kahi wai pani, me kāu mau ʻāpana koko, i loko o kou kino. Kōkua kēia i ka wehe ʻana i nā antibodies ʻino.
• ʻO ka Immunoglobulin intravenous (IVIG):ʻO kēia ke komo ʻana i ka hoʻololi ʻana i nā antibodies i loko o kou koko me nā antibodies olakino mai nā mea hāʻawi ma o kahi aa koko. Hiki i kēia ke kāohi i ka hana o kēlā mau antibodies i hana hewa.
• Nā lāʻau lapaʻau immunosuppressant: Hāʻawi ʻia kēia mau mea ma ke ʻano he mau pila i lawe ʻia ma ka waha. Hoʻemi lākou i ka hana o ka ʻōnaehana pale a kōkua i ka hoʻōki ʻana i ka hōʻino hou aʻe.

Hoʻohana ʻia kekahi mau lāʻau lapaʻau e like me ka lāʻau lapaʻau lōʻihi e pale ai i ka hoʻi hou ʻana o nā hōʻailona MOGAD:

• Nā lāʻau lapaʻau immunosuppressant (nā ʻano ʻē aʻe e hoʻomau i ka hoʻohana ʻana)
• ʻO ka mofetil mycophenolate
• ʻO Rituximab
• ʻAzathioprine
• Nā hoʻokomo ʻana o IVIG (intravenous immunoglobulin) a i ʻole nā ​​​​​​inikini immunoglobulin subcutaneous

Hiki i kēia mau lāʻau lapaʻau āpau ke loaʻa kekahi mau hopena ʻaoʻao. E wehewehe kāu kauka i kēia mau mea āpau iā ʻoe ma mua o kou hoʻomaka ʻana i ka lāʻau lapaʻau. He mea nui e hoʻomaopopo i kāu kauka inā ʻike ʻoe i kekahi mea hou.

I kekahi manawa, inā hoʻoulu ka maʻi i nā pilikia, hiki i kāu kauka ke ʻōlelo aku iā ʻoe e komo i nā papahana hoʻōla hou . No ka laʻana, inā ua hoʻopilikia ka pōʻino myelin i kou ʻike a i ʻole ka hele wāwae ʻana, hiki i kēia mau papahana hoʻōla hou ke kōkua iā ʻoe e aʻo e hana i nā hana o kēlā me kēia lā a hele a puni me ke kūʻokoʻa.

He aha ka wānana o ka maʻi MOGAD?

Ke aʻo ʻia nei ka wānana no MOGAD. Eia nō naʻe, maikaʻi ka nānā ʻana no ka hapa nui o nā maʻi . Hiki i kekahi poʻe ke ʻike i nā loli mau o ka ʻike. Eia kekahi, hiki i kekahi mau lāʻau lapaʻau (e like me ka hoʻohana lōʻihi ʻana i nā lāʻau immunosuppressant) ke hoʻonui i kou pilikia o nā hopena ʻaoʻao e like me nā maʻi. No laila, he mea nui e hahai i nā ʻōlelo a kāu kauka a loaʻa nā nānā mau.

Hoʻopilikia anei ʻo MOGAD i ke ola o ke kanaka?

ʻAʻole pili pololei ʻo MOGAD i kou ola . Nui nā kumu ʻē aʻe e pili ana i ke ola o ke kanaka. Ma muli o kou kūlana, hiki iā ʻoe ke loaʻa ka ʻike hou loa e pili ana i kēia mai kāu kauka.

Hiki ke pale ʻia ʻo MOGAD?

ʻO ka mea pōʻino, ʻaʻohe ala i ʻike ʻia e pale aku ai iā MOGAD . Ke noiʻi ʻia nei kēia. Hiki i kāu kauka ke kuhikuhi iā ʻoe e komo i nā hoʻokolohua lapaʻau e aʻo e pili ana i nā lāʻau lapaʻau hou a me nā ʻano pale.

Āhea wau e ʻike ai i ke kauka?

Inā loaʻa iā ʻoe kekahi o kēia mau mea, e ʻike koke i ke kauka:

• Inā ʻike koke ʻia nā hōʻailona.
• Inā ʻike ʻoe i kahi loli i kou ʻike maka.
• Inā he mau pilikia kou me kou hiki ke hele a neʻe a puni.
• Inā ʻoi aʻe ka ʻino o nā hōʻailona ma hope o ka mālama ʻana.
• Inā loaʻa iā ʻoe nā hopena ʻaoʻao mai ka lāʻau lapaʻau.

ʻO ʻoe ka mea ʻike maikaʻi loa i kou kino. Inā manaʻo ʻole kekahi mea he kūpono ʻole, mai kānalua e kamaʻilio me kāu kauka e pili ana i ia mea.

Inā ʻike ʻoe i nā hōʻailona o ka maʻi epilepsy (seizure) no ka manawa mua, e kāhea koke i kahi lumi pilikia.

He aha nā nīnau e pono iaʻu e nīnau aku i kaʻu kauka?

He mea maʻamau ka loaʻa ʻana o ka nui o nā nīnau ma kou manaʻo ke loaʻa iā ʻoe ka hōʻoia o MOGAD.

• "He aha ke ʻano o ka lāʻau lapaʻau i ʻōlelo ʻia noʻu?"
• "Pono anei au i ka lāʻau lapaʻau lōʻihi?"
• "He aha nā hopena ʻaoʻao o ka lāʻau lapaʻau?"
• "He aha kaʻu e hana ai inā e ʻoi koke aʻe kaʻu mau hōʻailona?"

Mai makaʻu e nīnau i kēia mau nīnau. Ma hope o ka loaʻa ʻana o kahi hōʻailona o MOGAD, he mea maʻamau ke kaumaha ʻia e nā manaʻo e like me, "He aha ka mea e hiki mai ana?" a "Āhea e hoʻi mai ai nā hōʻailona?" Ke noho nei ʻoe me kahi kūlana kahi i ʻike ʻole ʻia ai ke kumu, hiki i kēlā kānalua ke hoʻopilikia i kou olakino noʻonoʻo. ʻOiai he nui nā mea i maopopo ʻole, e hoʻomanaʻo aia kāu hui lapaʻau ma laila e hōʻoluʻolu i kou mau makaʻu a pane i kāu mau nīnau. Hiki iā lākou ke kōkua iā ʻoe e hoʻokele i kāu mau hōʻailona ke kū mai lākou a hana i nā hana e hōʻemi i kou pilikia o nā flareups i ka wā e hiki mai ana.

ʻO nā mea a mākou e makemake ai e lawe i ka home mai kēia moʻolelo (Leka Lawe-Home)

He maʻi paʻakikī a laha ʻole ʻo MOGAD. Akā, he mea nui e makaʻala iā ia a hoʻomaopopo i nā hōʻailona. E hoʻomanaʻo, ʻaʻole kēia he maʻi na ʻoe ia.

• Inā ʻike ʻoe i nā loli koke i kou ʻike, nāwaliwali, a i ʻole ka mae ʻana o ka ʻili , e ʻike koke i ke kauka.
• Me ka hōʻoia kūpono a me ka mālama ʻana, hiki ke kaohi maikaʻi ʻia nā hōʻailona o MOGAD.
• ʻOiai ʻaʻohe lāʻau lapaʻau, aia nā ala e mālama ai i kahi ola maikaʻi me ka maʻi.
• Inā ʻoe e kaumaha a kaumaha paha, e kamaʻilio me ke kauka a i ʻole kekahi āu e hilinaʻi ai e pili ana i ia mea. ʻAʻole ʻoe hoʻokahi.

Manaʻolana wau ua kōkua kēia ʻike iā ʻoe e loaʻa kahi ʻike o MOGAD. E noho olakino!

MOGAD , nā maʻi autoimmune, myelin, ʻōnaehana nerve, optic neuritis, transverse myelitis, ADEM