He aha ka Susac Syndrome? E kamaʻilio maʻalahi kākou e pili ana.

Loaʻa koke iā ʻoe ke poʻo ʻeha, nalowale ka hoʻomanaʻo, a me kahi loli iki i kou ʻike a me kou lohe? Malia paha hiki ke hana like kēia mau mea. He mea maʻamau iā mākou ke makaʻu i ka wā e ʻike koke ʻia ai kēlā mau hōʻailona. I kēia lā e kamaʻilio mākou e pili ana i kahi maʻi laha ʻole e hiki ai ke hana i kēlā mau hōʻailona, ​​​​akā ʻaʻole i ʻike nui ʻia ma ko mākou ʻāina. ʻO ia ka Susac Syndrome.

He aha ka maʻalahi o ka Susac Syndrome?

I ka ʻōlelo maʻalahi, he maʻi autoimmune ka Susac Syndrome. E noʻonoʻo i ka ʻōnaehana pale o ko mākou kino e like me ka pūʻali koa o ko mākou ʻāina. ʻO kāna hana nui ka pale ʻana iā mākou mai nā germs e hoʻoulu ai i nā maʻi. Akā i kekahi manawa hana hewa kēia ʻōnaehana. A laila, ma kahi o ka hoʻouka ʻana i nā ʻenemi mai waho, hoʻomaka ia e hoʻouka i nā cell maikaʻi o ko mākou kino ponoʻī. ʻO kēia ka mea a mākou e kapa nei he mau maʻi autoimmune.

I loko o ka Susac Syndrome, hoʻouka kā mākou ʻōnaehana pale i nā kīʻaha koko liʻiliʻi i loko o ka lolo, retina, a me cochlea . ʻO kēia hoʻouka ke kumu o ka pehu ʻana o kēlā mau kīʻaha koko, e hōʻemi ana a ālai loa paha i ke kahe koko ma o lākou. ʻO ia ke kumu o nā hōʻailona o kēia maʻi.

Ma hea kahi i hoʻopilikia nui ʻia ai kēia maʻi?

ʻO ka mea nui, hoʻopilikia kēia maʻi i ʻekolu mau ʻāpana o ke kino: ka lolo, nā maka, a me nā pepeiao.

He maʻi laha ʻole kēia. No laila, he paʻakikī ke ʻōlelo pololei i ka nui o ka poʻe e loaʻa ana iā ia. I kekahi manawa, ua like nā hōʻailona me kekahi maʻi ʻē aʻe i kapa ʻia ʻo Multiple Sclerosis (MS), no laila hiki i nā kauka ke huikau i nā maʻi ʻelua. No laila, hiki ke lōʻihi ka manawa e loaʻa ai ka hōʻailona pololei.

He aha nā hōʻailona o ka Susac Syndrome?

Hiki ke ʻokoʻa nā hōʻailona mai kēlā kanaka a kēia kanaka, akā pili lākou i nā ʻāpana nui ʻekolu i ʻōlelo ʻia ma mua. E nānā kākou i ke ʻano o lākou.

Pehea ka hopena o kēia mau ʻano iā ʻoe?

ʻAʻole like ke ʻano o kēia mau hōʻailona no nā kānaka a pau. Hoʻokahi wale nō manawa e loaʻa ai kēia i kekahi poʻe i ko lākou ola. No kekahi poʻe, hele mai a hele aku nā hōʻailona, ​​a laila hoʻi mai... a pēlā aku. I ka manawa pinepine, hiki i nā hōʻailona ke emi a emi iho i loko o kekahi mau makahiki. He kakaikahi wale nō ka poʻe i loaʻa nā hōʻailona o nā mea ʻekolu i ka manawa like e ʻike ʻia ai ka maʻi.

No ke aha i kū mai ai ka Susac Syndrome?

ʻAʻole i ʻike ʻia ke kumu kikoʻī o kēia. Akā, ua ʻike mākou he maʻi autoimmune ia. E like me ka mea i ʻōlelo ʻia ma mua, hoʻouka ko mākou ʻōnaehana pale ponoʻī i nā cell i loko o nā kīʻaha koko liʻiliʻi i loko o ko mākou lolo, retina, a me ka pepeiao o loko. Hoʻoulu kēia hoʻouka i kēlā mau cell e pehu. A laila hiki i kēlā mau kīʻaha koko ke pani hapa a piha paha. Ke hana ʻia kēlā, ʻaʻole loaʻa i kēlā mau ʻāpana o ke kino ka oxygen a me nā meaʻai e pono ai lākou. ʻO ia ke kumu o nā hōʻailona āpau i ʻōlelo ʻia ma mua.

He maʻi hoʻoilina anei kēia? ʻO wai ka mea i ʻoi aku ka pilikia?

ʻAʻole, ʻaʻohe hōʻike e hōʻike ana he maʻi hoʻoilina kēia. Eia nō naʻe , ʻekolu manawa ka nui o ka loaʻa ʻana o kēia maʻi i nā wahine ma mua o nā kāne. Hoʻomaka pinepine nā hōʻailona ma waena o 20 a me 40 mau makahiki.

He aha nā pilikia e hiki mai ana o kēia maʻi?

ʻO ka hōʻino ʻana i nā maka a me nā pepeiao i hana ʻia e nā kīʻaha koko i ālai ʻia i kekahi manawa hiki ke mau loa.ʻO ke ʻano kēia, aia kahi hiki ke nalowale mau loa ka ʻike a me ka lohe. A, ʻoiai he mea kakaikahi loa, hiki nō hoʻi ke loaʻa kahi maʻi i kapa ʻia ʻo dementia, kahi i nalowale loa ai ka hoʻomanaʻo.

Pehea e ʻike ai ke kauka i kēia maʻi? (Diagnosis)

E hana ana kāu kauka i kekahi mau hoʻokolohua e ʻike ai i kēia maʻi.

• Hoʻokolohua kino
• Hoʻokolohua neurological
• Hoʻokolohua maka

Eia kekahi, hiki iā ʻoe ke hana i nā hoʻokolohua e like me kēia e ʻike hou aʻe e pili ana i kāu mau hōʻailona:

• ʻO ke kiʻi Magnetic Resonance Imaging (MRI) o ka lolo: ʻAe kēia i ke kauka e ʻimi i nā kiko keʻokeʻo i kapa ʻia ʻo 'snowball lesions' ma kahi e pili ai nā hemispheres ʻelua o ka lolo (corpus callosum). He hōʻailona kikoʻī kēia o ka Susac Syndrome.
• ʻO Fluorescein Angiography: He hoʻāʻo kūikawā kēia e nānā ai i nā kīʻaha koko i loko o ka retina o ka maka. Hiki iā ia ke ʻike i nā mea i ālai ʻia i loko o nā kīʻaha koko.
• Audiogram: He hoʻāʻo hoʻolohe kēia. Nānā ia inā hiki iā ʻoe ke lohe i nā leo alapine haʻahaʻa a inā pilikia ʻoe i ka hoʻomaopopo ʻana i ka ʻōlelo.

He aha nā lāʻau lapaʻau no kēia?

ʻO ka pahuhopu nui o ka lāʻau lapaʻau, ʻo ia ke kāohi i ko mākou ʻōnaehana pale kino, kahi e hana hewa nei. Hoʻohana ʻia nā immunosuppressants no kēia. Eia kekahi mau laʻana:

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

Hiki ke hāʻawi ʻia kēia mau lāʻau lapaʻau i ke kino ma nā ʻano like ʻole. Lawe ʻia kekahi ma ke ʻano he mau pila a i ʻole nā ​​capsules. Hāʻawi ʻia kekahi ma ke ʻano he mau inikini. Hāʻawi ʻia kekahi ma ke ʻano intravenous (IV) ma o ka saline. Hana kēia mau lāʻau lapaʻau ma ka hoʻēmi ʻana i ka ʻōnaehana pale ikaika loa.

E aʻo e pili ana i ka mālama ʻana, ka hoʻōla ʻana, a me ka nānā ʻana

Aia kekahi mau hopena ʻaoʻao o ka lāʻau lapaʻau?

ʻAe, e like me nā lāʻau lapaʻau āpau, hiki i kēia ke loaʻa nā hopena ʻaoʻao like ʻole. No laila, e kamaʻilio me kāu kauka e pili ana i kēia ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau. Inā loaʻa iā ʻoe kekahi mau hopena ʻaoʻao, e hoʻomaopopo i kāu kauka e pili ana iā lākou.

ʻEhia ka lōʻihi e ola ai ma hope o ka lāʻau lapaʻau?

Inā ʻike mua ʻia kēia a hoʻomaka koke ʻia ka mālama ʻana, hiki ke hoʻomaikaʻi koke ʻia nā hōʻailona. Hoʻokahi wale nō ka maʻi ʻana o kekahi poʻe. Hiki i kekahi ke loaʻa nā hanana hou i nā makahiki. Eia nō naʻe , me ka lāʻau lapaʻau immunosuppressant kūpono, ua emi nui ka pilikia o ka hoʻi hou ʻana.

Pehea lā ke ʻano o ke ola me kēia maʻi? (Outlook)

He maikaʻi loa ka manaʻo no ka poʻe e loaʻa ana ka lāʻau lapaʻau i ka wā e ʻike ʻia ai nā hōʻailona. Hiki i kēia ke pale aku i ka hōʻino mau loa i ka lolo, nā maka, a me nā pepeiao. He mea kākaʻikahi nā pilikia mau loa e like me ka nalowale o ka ʻike a me ka nalowale o ka lohe. ʻAʻole kēia he maʻi e hoʻoweliweli i ke ola, koe wale nō i nā hihia kākaʻikahi loa. ʻOiai hiki ke hoʻopilikia i kou ʻano o ke ola, ʻaʻole ia e hoʻopilikia pololei i kou ola.

Pehea e pale aku ai i ka maʻi a i ka manawa hea e ʻike ai i ke kauka?

ʻAʻohe ala kikoʻī e pale aku ai i ka Susac Syndrome. Eia nō naʻe, ma ka hahai pono ʻana i ka hoʻolālā lapaʻau i hāʻawi ʻia e kāu kauka, hiki iā ʻoe ke hōʻemi i ka hoʻi hou ʻana o nā hōʻailona (flare-ups).

Inā ʻike ʻoe i kekahi o kēia mau loli, e ʻike koke i kāu kauka:

• Ka loli ʻana o ka ʻike maka
• Poho lohe
• He loli i ka hiki ke noʻonoʻo a hoʻomanaʻo paha
• Ka loli ʻana o ke ʻano a i ʻole ke ʻano pilikino

ʻO ka wikiwiki o ka ʻike ʻia ʻana o ka maʻi, ʻo ka maikaʻi o kou hiki ke noho olakino a pale i ka hōʻino mau loa.

Nā nīnau e nīnau aku ai i kāu kauka

• "Hiki iaʻu ke hoʻi mai ma hope o ka hoʻomaikaʻi ʻana o koʻu mau hōʻailona?"
• "He aha ke ʻano o ka lāʻau lapaʻau āu e ʻōlelo mai nei noʻu?"
• "Pehea ka lōʻihi e pono ai iaʻu e hoʻohana i kēia lāʻau lapaʻau a pehea?"
• "He aha nā hopena ʻaoʻao o kēia lāʻau lapaʻau?"
• "Pono anei au i nā mea kōkua hoʻolohe a i ʻole kahi implant cochlear?"

Hiki i ka Susac Syndrome ke hoʻopilikia i kou ola o kēlā me kēia lā. He mea maʻamau ka makaʻu a me ka hopohopo i ka wā e loli koke ai nā mea āu i manaʻoʻiʻo mau ai, e like me kou ʻike a i ʻole kou lohe ʻana. I kekahi manawa hiki i ke kamaʻilio ʻana me kahi kākāʻōlelo olakino noʻonoʻo ke lilo i mea hōʻoluʻolu nui. E hoʻomanaʻo, ʻoi aku ka maikaʻi o ka haʻi ʻana i ke kauka i ka wā e ʻike ai ʻoe i nā hōʻailona, ​​​​no ka mea hiki ke loaʻa nā pilikia. Hiki i ka mālama koke ke pale i ka hōʻino mau loa.