Ua ʻike anei ʻoe i kēia maʻi ʻē (Susac Syndrome) e hoʻopilikia nei i kou mau maka, pepeiao, a me ka lolo i ka manawa like?

E noʻonoʻo inā loaʻa koke iā ʻoe kahi ʻeha poʻo nui, ka ʻike maka pohihihi, a me ka nalowale o ka lohe? Manaʻo paha ʻoe he ʻekolu mau pilikia pili ʻole kēia. Akā i kēia lā ke kamaʻilio nei mākou e pili ana i kahi maʻi kakaikahi loa e hoʻohui pū ana i kēia mau hōʻailona ʻekolu, akā ʻaʻole i kūkākūkā nui ʻia i loko o ke kaiāulu. Ua kapa ʻia kēia ʻo "Susac Syndrome." He mea hou paha kēia inoa iā ʻoe. Akā he mea nui loa ia e ʻike i kēia.

I ka ʻōlelo maʻalahi, he aha ka Susac Syndrome?

ʻO ka Susac Syndrome kahi maʻi kahi e hoʻouka hewa ai ka ʻōnaehana pale o ko mākou kino ponoʻī, ʻo ia hoʻi ka ʻōnaehana pale maʻi, i ko mākou kino ponoʻī. Kāhea mākou i kēia he maʻi autoimmune. E noʻonoʻo i kahi pūʻali koa e pale aku ana i kahi ʻāina e hoʻouka hewa ana i kona poʻe ponoʻī.

I loko o kēia maʻi, kuhikuhi ko mākou ʻōnaehana pale i nā kīʻaha koko liʻiliʻi ma ʻekolu mau wahi koʻikoʻi o ko mākou kino. ʻO kēlā mau wahi ʻekolu:

1. Lolo

2. Retina

3. Pepeiao o loko (Cochlea)

Ke hana ʻia kēia, pehu nā paia o loko o kēia mau kīʻaha koko. E like me ka paʻa ʻana o ka paipu wai, ua emi ke kahe ʻana o ka wai ma o kēia mau kīʻaha koko, a i kekahi manawa ua paʻa loa. Hoʻonele kēia i ka lolo, nā maka, a me nā pepeiao i ka oxygen a me nā meaʻai e pono ai lākou. ʻO ia ka manawa e hoʻomaka ai nā hōʻailona o kēia maʻi e ʻike ʻia.

He aha nā hōʻailona nui o kēia maʻi?

I loko o ka Susac Syndrome, hiki ke ʻike pū ʻia nā hōʻailona e pili ana i kēia mau ʻāpana nui ʻekolu a i ʻole kaʻawale. Akā, ʻo ka maʻamau, ua hoʻopilikia ʻia nā ʻāpana ʻekolu. E nānā kākou i ke ʻano o kēia mau hōʻailona.

No ke aha e hana ai kēia a ʻo wai ka mea i pilikia nui loa?

E like me kā mākou i kūkākūkā ai ma mua, ʻaʻole i loaʻa ke kumu kikoʻī o kēia . ʻO ka mea wale nō i ʻike ʻia, he maʻi autoimmune ia. ʻAʻole ia he maʻi hoʻoilina . ʻO ia hoʻi, ʻaʻohe hōʻike e loaʻa i nā keiki inā loaʻa i ko lākou mau mākua.

Eia nō naʻe, hiki i kekahi mau kumu ke kuhikuhi i ka poʻe i pilikia i ka hoʻomohala ʻana i kēia maʻi:

• Kāne: ʻOi aku ka nui o nā wāhine i kēia maʻi ma mua o nā kāne ma mua o ʻekolu manawa.
• Makahiki: Hoʻomaka pinepine kēia mau hōʻailona e ʻike ʻia i nā poʻe ma waena o 20 a me 40 mau makahiki .

Pehea e ʻike ai nā kauka i kēia?

Hiki ke paʻakikī ke ʻike i ka Susac Syndrome no ka mea ua like kona mau hōʻailona me nā maʻi ʻē aʻe he nui. No ka laʻana, ua like loa nā hōʻailona me nā maʻi e like me ka Multiple Sclerosis (MS), ka hahau ʻana, a me ka maʻi lolo (encephalitis). No laila, manaʻo hewa paha ke kauka he maʻi ʻokoʻa ia.

No laila, ua hana ʻia kekahi mau hoʻokolohua kūikawā e hana i kahi hōʻoia pololei.

• Hoʻokolohua kino
• Hoʻokolohua neurological
• Hoʻokolohua maka

Eia kekahi, he mea nui loa kēia mau hoʻokolohua kūikawā e hōʻoia i ka maʻi.

He aha ka lāʻau lapaʻau?

ʻO ka pahuhopu nui o ka mālama ʻana i kēia maʻi, ʻo ia ke kāohi i kā mākou ʻōnaehana pale kino, kahi e hana hewa nei. ʻO ia hoʻi, e kāohi i kāna hana. Kāhea mākou i nā lāʻau i hāʻawi ʻia no kēia kumu he immunosuppressants .

Pono paha e lawe ʻia kēia mau lāʻau lapaʻau i ka wā lōʻihi. ʻO kekahi o nā lāʻau lapaʻau i hoʻohana pinepine ʻia:

• Nā Corticosteroids - e.g. prednisone
• ʻO ka immunoglobulin intravenous (IVIG)
• ʻO ka mikofenolate
• ʻAzathioprine
• ʻO Cyclophosphamide
• ʻO Rituximab

Aia kekahi mau ala e hāʻawi ai i kēia mau lāʻau lapaʻau. Hāʻawi ʻia kekahi ma ke ʻano he mau pila, hāʻawi ʻia kekahi ma ke ʻano he mau inikini, a hāʻawi ʻia kekahi mau lāʻau lapaʻau ma ke ʻano intravenous (IV) ma ke ʻano he wai saline.

E like me nā lāʻau lapaʻau āpau, hiki i kēia ke loaʻa nā hopena ʻaoʻao. No laila e kamaʻilio ākea me kāu kauka e pili ana i ia mea ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau. Inā loaʻa kekahi hopena ʻaoʻao, e hoʻomaopopo koke iā lākou.

Pehea lā e loaʻa ai iā kākou ka manaʻolana no ka wā e hiki mai ana?

ʻOiai paha e kani weliweli ka inoa ʻo Susac Syndrome, aia nā lāʻau lapaʻau maikaʻi loa no kēia ʻano. ʻOiai inā ʻike ʻia a mālama ʻia ka maʻi i ka wā mua, maikaʻi loa nā hopena. Hiki i ka lāʻau lapaʻau mua ke pale i ka hōʻino mau loa i ka lolo, nā maka, a me nā pepeiao.

Eia nō naʻe, inā hoʻopaneʻe ʻia ka lāʻau lapaʻau, i kekahi manawa hiki ke nalowale mau ka ʻike a me ka lohe. Eia naʻe, he mea kakaikahi loa kēia.

ʻAʻole loa kēia maʻi e hoʻoweliweli i ke ola. ʻO ia hoʻi, ʻaʻole ia e hoʻopōkole i ka manaʻolana o ke ola. Eia naʻe, hiki iā ia ke hoʻopilikia i ke ʻano o ke ola o kēlā me kēia lā. Ke loli nā mea e like me ka ʻike a me ka lohe, i maikaʻi ma mua, a me nā loli i ke ʻano o kou noʻonoʻo a me ka hoʻomanaʻo ʻana, hiki iā ia ke loaʻa ka hopena noʻonoʻo loa. No laila, ʻo ke kamaʻilio ʻana me kahi kākā'ōlelo olakino noʻonoʻo ma hope o kahi hōʻailona e like me kēia e lawe mai i ka hōʻoluʻolu i nā poʻe he nui.

Āhea wau e ʻike ai i ke kauka?

Inā ʻike ʻoe a i ʻole kekahi āu i ʻike ai i hoʻokahi a ʻoi aku paha o nā loli ma lalo nei i ka manawa like, e ʻike koke i ke kauka.

• Nā loli koke o ka ʻike (nā kiko ʻeleʻele, me he mea lā ua uhi ʻia ʻoe e kahi pale).
• Ka nalowale koke ʻana o ka lohe , ka poniuniu, a i ʻole ke kani ʻana o nā pepeiao.
• Paʻakikī i ka noʻonoʻo ʻana a i ʻole ka hoʻomanaʻo ʻana (nā loli i ka hana o ka lolo).
• Nā loli i wehewehe ʻole ʻia i ke ʻano a i ʻole ke ʻano pilikino .
• Inā ke hoʻopilikia nei kēia mau hōʻailona i kou ola o kēlā me kēia lā .

Hiki i kāu kauka ke ʻike i ke kumu kūpono o kēia mau hōʻailona a hāʻawi iā ʻoe i ka lāʻau lapaʻau e pono ai, e hiki ke kōkua i ka pale ʻana i nā pilikia lōʻihi.