Ua ʻike paha ʻoe, a i ʻole ua ʻike paha, i kekahi ʻaoʻao o kou helehelena e ʻulaʻula koke ana a hou, ʻoiai ʻo kekahi ʻaoʻao he mea maʻamau loa? No kekahi poʻe, hiki ke lilo kēia i mea ʻē, a he mea ʻoluʻolu ʻole paha. ʻO kēia ka mea a mākou e kapa nei ʻo Harlequin Syndrome ma nā ʻōlelo lapaʻau. ʻOiai ke kani nui nei ka inoa, ʻaʻohe mea e makaʻu ai, akā he mea nui e makaʻala i ia mea.
He aha maoli kēia (Harlequin Syndrome)?
I ka ʻōlelo maʻalahi, ʻo Harlequin Syndrome kahi kūlana kahi e ʻulaʻula a hou ai kekahi ʻaoʻao o kou maka, ʻāʻī, a i kekahi manawa ʻo ka umauma luna . ʻO ka mea kupanaha, ʻaʻohe o kēia e hana ma kekahi ʻaoʻao o kou kino, kahi e noho maʻamau.
Hiki mai kēia kūlana ma muli o ka loli o ka hana o ka ʻōnaehana nerve sympathetic o ko mākou kino. I kēia manawa ke noʻonoʻo nei paha ʻoe i ke ʻano o kēia ʻōnaehana nerve sympathetic. He ʻōnaehana hoʻomalu kupaianaha ko ko mākou kino, i kapa ʻia ʻo ka ʻōnaehana nerve autonomic . ʻO kēia ka mea e hoʻomalu i nā mea he nui e hana "akomi" me ka ʻole o ko mākou noʻonoʻo ʻana iā lākou, e like me ka helu o ko mākou puʻuwai, ke koko, ka hanu ʻana, a me ka ʻai ʻana.
ʻO kahi ʻāpana o kēia ʻōnaehana nerve autonomic ka ʻōnaehana nerve sympathetic. Ua like ia me ka ʻōnaehana 'alert' o ko mākou kino. Hoʻāla ʻia kēia ʻōnaehana i ka wā e holo ai mākou, i ka wā e makaʻu ai mākou, a i ʻole i ka wā e manaʻo ai mākou i kahi manaʻo ikaika e like me ka hauʻoli nui a i ʻole ke kaumaha. Ua kapa ʻia kēia ʻo ka pane 'fight-or-flight' . ʻO kēia ʻōnaehana nerve sympathetic ka mea e hōʻailona i ko mākou kino e hou e kāohi i ka mahana o ko mākou kino, e like me ka wā e hoʻoikaika kino ai mākou e hoʻomaʻalili. (Harlequin Syndrome) Hōʻike ʻia nā hōʻailona ke hoʻāla ʻia kēia ʻōnaehana nerve sympathetic.
He ʻelua mau mea ʻokoʻa anei (Harlequin Syndrome) a me (Harlequin Sign)?
ʻAe, aia kahi ʻokoʻa iki. ʻO ka (Harlequin Syndrome) e pili ana i ke kūlana neurological aʻu i ʻōlelo ai ma mua. ʻO ka (Harlequin Sign) e pili ana i ka hōʻailona nui o ka maʻi. ʻO ia hoʻi, loli ke kala o ka ʻili ma kekahi ʻaoʻao o ke kino (ʻulaʻula a ʻeleʻele paha) a ʻo ka ʻili ma kekahi ʻaoʻao e mau ana ka mae a maʻamau paha. Hiki ke ʻike ʻia kēia (Harlequin Sign) ʻaʻole wale ma (Harlequin Syndrome) akā he hōʻailona hoʻi o kekahi mau maʻi olakino ʻē aʻe.
He kūlana maʻamau loa kēia? He mea hoʻoweliweli anei ia i ke ola?
He maʻi laha ʻole ka Harlequin Syndrome. Ua hōʻike wale ʻia i loko o kekahi mau hihia ma ka honua holoʻokoʻa. No laila, ʻaʻole ia he mea kupanaha inā ʻaʻole ʻoe i lohe mua.
ʻO ka mea nui, ʻaʻole kēia maʻi e hoʻoweliweli i ke ola . A ʻaʻole ia e hoʻopilikia i kou ola. No laila, ʻaʻohe kumu e makaʻu pono ʻole ai.
He aha nā hōʻailona o kēia?
I ka Harlequin Syndrome, ʻokoʻa nā hōʻailona āu e ʻike ai ma kēlā me kēia ʻaoʻao o kou kino.
Nā hōʻailona e ʻike ʻia ma ka ʻaoʻao i hoʻopilikia ʻia:
- Ke ʻulaʻula a ʻeleʻele paha ka ʻili ma mua o kou kala ʻili maʻamau.
- Ke hou nui nei.
- Mehana ka ʻili ma ia wahi ke hoʻopā ʻia.
Nā hōʻailona i ʻike ʻia ma ka ʻaoʻao i hoʻopilikia ʻole ʻia:
- ʻIli keʻokeʻo.
- ʻAʻole hou iki.
- Anu ka ʻili ma ia wahi ke hoʻopā ʻia.
Ma kēia ʻano, ua like kēia mau hiʻohiʻona me he mea lā ua māhele ʻia nā ʻaoʻao o ke kino i ka hapalua. E noʻonoʻo i kahi laina kū pololei i kaha ʻia mai waenakonu o kou lae, i lalo o kou ihu, a i lalo i kou umauma.
Ma waho aʻe o kēia mau hōʻailona nui, hiki ke ʻike ʻia kekahi mau hōʻailona ʻē aʻe i maʻamau ʻole ʻia :
- Ma kekahi mau wahi, ua maloʻo ka ʻili a me ka ʻili ʻana e like me ka unahi.
- ʻEha poʻo.
- Ihu wai.
- Nā waimaka e hele mai ana mai nā maka mai.
- Ke kulou ʻana o ka lihilihi maka ma kekahi ʻaoʻao a/a i ʻole nā loli i nā haumāna (i kapa ʻia hoʻi ʻo Horner Syndrome , hiki ke pili pū me kahi maʻi ʻokoʻa).
I ka manawa hea e ʻike ʻia ai kēia mau hōʻailona?
Hiki paha iā ʻoe ke ʻike i kēia mau hōʻailona o ka Harlequin Syndrome, ʻoiai ma nā kūlana aʻe:
- I ka wā e hoʻoikaika kino ai: I ka wā e holo ai, lele ai, pāʻani ai, a i ʻole e hoʻomaʻamaʻa kino ana ma ka hale hoʻoikaika kino.
- I ka wā o nā manaʻo ikaika a i ʻole ke kaumaha o ka noʻonoʻo: i ka wā e hauʻoli nui ai ʻoe, kaumaha, makaʻu, a i ʻole ma lalo o ke kaomi ma mua o kahi mea e like me ka hoʻokolohua a i ʻole ka ninaninau.
- I nā aniau wela: i ka wā e hele ai i waho i ka lā, i ka wā e noho ai i loko o kahi lumi wela.
- I ka ʻai ʻana i ka meaʻai ʻala: I ka ʻai ʻana i kahi kīʻaha i hana ʻia me ka nui o ka chili.
E noʻonoʻo ʻoe e pāʻani ana i ka cricket me kāu mau hoaaloha a ke hou nui nei ʻoe, a ʻo ka ʻaoʻao ʻākau wale nō o kou maka i ʻulaʻula a hou, akā ua maikaʻi ka ʻaoʻao hema, e like me ka mea maʻamau. ʻO ia ka mea e hana ʻia ma kēia ʻike.
He aha nā kumu o ka Harlequin Syndrome?
I ka hapanui o nā hihia, he paʻakikī ke loaʻa kahi kumu kikoʻī no ka Harlequin Syndrome. ʻO ia hoʻi, ʻaʻole maopopo ke kumu. Eia nō naʻe, ua ʻike ʻia e ka noiʻi he hiki ke hana ʻia e kahi hana hewa i ke kamaʻilio ʻana ma waena o nā cell ma ka ʻaoʻao ʻākau a me ka hema o kā mākou ʻōnaehana nerve autonomic.
I kekahi manawa, hiki ke loaʻa kahi hoʻopilikia i kēia ala kamaʻilio. Hele kēia leka kamaʻilio mai ka hypothalamus i loko o ko kākou lolo a i ke kaula spinal thoracic ma ka umauma o luna. ʻO ia kahi e hoʻolako ai nā aʻalolo sympathetic i ka maka a me ke kino o luna. Hoʻomalu kēia ala i ka hou ʻana a me nā kīʻaha koko.
Aia kekahi mau kumu e hiki ai ke hōʻeha ʻia kēia:
- He puʻupuʻu ia e hoʻokumu ʻia ana ma ke ala o ke aʻalolo.
- He ʻeha a poino paha i hana ʻia e ka maʻi a i ʻole ka mumū.
- He ulia i hana ʻia ma muli o ke ʻoki ʻana ma ka umauma o luna, e like me ke ʻoki ʻana i ke kuamoʻo.
ʻO wai ka mea i ʻoi aku ka paʻakikī o ka loaʻa ʻana o kēia? (Nā kumu pilikia)
ʻO kēia maʻi, i kapa ʻia ʻo Harlequin Syndrome, hiki ke hoʻopilikia i kekahi o kēlā me kēia makahiki, me nā pēpē, nā keiki, a me nā pākeke . Eia nō naʻe, ʻoi aku ka nui o kou loaʻa ʻana i kēia maʻi inā ʻoe:
- Inā ua loaʻa iā ʻoe kahi endoscopic thoracic sympathectomy (kahi hana ʻokiʻoki i hoʻohana ʻia e mālama i ka hou nui).
- Inā ua loaʻa iā ʻoe ka anesthesia.
- Inā ua loaʻa iā ʻoe kahi ulia i hoʻopilikia i kāu ʻōnaehana nerve sympathetic.
- Inā he maʻi olakino ʻē aʻe e like me ka Horner Syndrome .
He aha nā pilikia e hiki ai i kēia ke hana?
ʻOiai he mea kakaikahi loa kēia, hiki ke loaʻa kekahi mau pilikia ma muli o ka Harlequin Syndrome. Eia kēia mau mea:
- Ka paʻakikī o ka hoʻokele ʻana i ka mahana o ke kino.
- Ka loli mau o ke kala o ka maka (ma kekahi ʻaoʻao).
- Kaumaha, hopohopo, a i ʻole ka haʻahaʻa o ka manaʻo ponoʻī i hoʻokumu ʻia e ka noʻonoʻo ʻana i ke ʻano o kekahi. No ka mea, ke ʻike kekahi poʻe i kēia ma ke kaiāulu, hiki ke lilo i mea hilahila iki no kekahi poʻe.
Pehea e hōʻoia pololei ai i ka (Harlequin Syndrome)? (Diagnosis)
E hoʻoholo ke kauka inā loaʻa iā ʻoe ka Harlequin Syndrome ma ka nānā ʻana i kāu mau hōʻailona. ʻO ka hana mua he hoʻokolokolo kino . A laila, hana ʻia nā hoʻokolohua like ʻole e kāpae i nā kūlana ʻē aʻe e hiki ke hoʻoulu i nā hōʻailona like a e hoʻoholo inā he kumu kumu.
Aia kekahi mau hoʻokolohua e hiki ke hoʻohana ʻia e ʻike ai i ka Harlequin Syndrome:
- Hoʻāʻo koʻikoʻi: Ma kēia hoʻāʻo, e hoʻoikaika kino ke kauka iā ʻoe a nānā iā ʻoe e ʻike inā hoʻoulu ka hana kino i nā hōʻailona. Hiki ke ʻike nui ʻia nā hōʻailona o ka Harlequin Syndrome i ka wā o ka hoʻoikaika kino.
- Nā hoʻāʻo kiʻi: ʻAe kēia mau hoʻāʻo i kāu kauka e ʻike i loko o kou kino. He mau hoʻāʻo ʻeha ʻole kēia. ʻO nā laʻana e komo pū me ka X-ray umauma, CT scan (Computed Tomography), a me MRI (Magnetic Resonance Imaging) .
He aha nā lāʻau lapaʻau no kēia?
ʻO ka nūhou maikaʻi, ʻaʻole pono mau ka lāʻau lapaʻau no ka Harlequin Syndrome. I kekahi manawa hiki ke hoʻomaikaʻi ke kūlana iā ia iho. Inā ʻōlelo ke kauka i ka lāʻau lapaʻau, pili ia i ke kumu o kāu mau hōʻailona. ʻO nā koho lapaʻau:
- Hiki i ka hoʻōla a i ʻole ke aʻo ʻana ke kōkua i ka hōʻemi ʻana i ka ʻoluʻolu ʻole o ka nohona a me ke kaumaha noʻonoʻo i hoʻokumu ʻia e kēia ʻano.
- He lāʻau pale i hāʻawi ʻia e kāohi i ka ʻulaʻula o ka maka a i ʻole ke kala ʻana o ka ʻili`(poloka ganglion stellate)`.
- E kāohi i ka hou ʻana a me nā hōʻailona ʻē aʻe me nā inikini toxin botulinum .
- Inā he puʻupuʻu a he lesion paha ke kumu, pono ke ʻoki kino a i ʻole ka radiation therapy e wehe ai.
He aha kāu e manaʻo ai inā loaʻa iā ʻoe ka Harlequin Syndrome?
ʻAʻole maʻamau ka Harlequin Syndrome e hōʻeha nui i kou kino. Hiki ke nalo aku kāu mau hōʻailona i ka hala ʻana o ka manawa. A i ʻole, hiki iā ʻoe ke ʻike wale i nā hōʻailona ke hoʻoikaika kino ʻoe a ʻai paha i kahi meaʻai ʻala. ʻAʻole pono nā kānaka a pau i ka lāʻau lapaʻau. E haʻi aku kāu kauka iā ʻoe i nā mea hou aʻe e pili ana i kou kūlana a me nā mea e manaʻo ai i ka wā e hiki mai ana.
Pehea ka lōʻihi o kēia mau hōʻailona?
ʻO ka maʻamau , he mau minuke wale nō a i kekahi mau hola wale nō ka mau ʻana o nā hōʻailona. ʻO ia hoʻi, ma hope o kou hoʻōki ʻana i ka hana i hoʻokumu ai i nā hōʻailona, e hoʻi hou ka ʻili i ka maʻamau i loko o kahi manawa pōkole. No ka laʻana, inā loaʻa nā hōʻailona i ka wā e hoʻoikaika kino ana, ke hoʻōki ʻoe i ka hoʻoikaika kino, hoʻomaʻalili, a hoʻomaha, e hoʻi hou ka ʻili i ka maʻamau.
Hiki ke pale ʻia ka Harlequin Syndrome?
ʻAʻohe ala e pale aku ai i ka Harlequin Syndrome, wahi a nā ʻepekema i ʻike ʻia a hiki i kēia manawa.
Āhea ʻoe e ʻike ai i ke kauka?
Inā ʻike ʻoe i nā hōʻailona o ka Harlequin Syndrome, e like me ka hou ʻana ma kekahi ʻaoʻao o ke kino a me nā loli o ke kala o ka ʻili, he mea nui e ʻike i ke kauka . ʻAʻohe mea e hopohopo ai no ka Harlequin Syndrome. Eia nō naʻe, i nā hihia kakaikahi, hiki ke lilo i hōʻailona o kahi maʻi ma lalo, e like me ka puʻupuʻu, no laila he mea nui e ʻike i ke kauka e hoʻoholo i ke kumu pololei.
He aha nā nīnau āu e nīnau ai i ke kauka?
Ke hele ʻoe e ʻike i ke kauka, he mea maikaʻi ke nīnau ʻana i kēia mau nīnau:
- He aha ke kumu o koʻu mau hōʻailona?
- Pono anei au i ka lāʻau lapaʻau a i ʻole ke ʻoki kino?
- Aia kekahi mau hopena ʻaoʻao o ka lāʻau lapaʻau?
- Inā hilahila a ʻoluʻolu ʻole paha wau ma muli o koʻu mau hōʻailona, he aha nā koho lapaʻau e loaʻa ana?
He like anei ka (Harlequin Syndrome) a me ka (Harlequin Ichthyosis)?
ʻAʻole, he ʻelua kūlana ʻokoʻa loa kēia. He mea kēia e hiki ai ke huikau i nā poʻe he nui, no laila he mea maikaʻi ke wehewehe.
ʻO ka Harlequin Syndrome kahi maʻi e hoʻoulu ai i ka hou ʻana a me ka hoʻololi ʻana o ka ʻili ma kekahi ʻaoʻao o ke kino. ʻAʻole ia he mea hoʻoweliweli i ke ola, a ʻaʻole hoʻi he maʻi genetic (eia naʻe, i kekahi mau hihia hiki ke hānau ʻia).
Ma kekahi ʻaoʻao, ʻo Harlequin Ichthyosis kahi maʻi ʻili genetic hiki ke hoʻoweliweli i ke ola.. Hānau ʻia kahi pēpē me kēia maʻi me ka ʻili mānoanoa a ʻāʻī hoʻi. Loaʻa i nā pēpē me Harlequin Ichthyosis nā ʻāpana ʻili e like me ke daimana i hoʻokaʻawale ʻia e nā māwae hohonu. I kekahi manawa kapa nā kauka i kēia maʻi ʻo "Harlequin Baby Syndrome." ʻOiai ke kani nei e like me "Harlequin Syndrome," he ʻelua mau maʻi like ʻole kēia.
Leka Lawe-Home
ʻO ka Harlequin Syndrome (kahi maʻi e hoʻoulu ai i ka hou ʻana no ka manawa pōkole a me ka hoʻololi ʻana o ka ʻili ma kekahi ʻaoʻao o kou kino) e hoʻopilikia wale i hoʻokahi ʻaoʻao o kou kino. He mea maʻamau ka manaʻo ʻoluʻolu ʻole ke ʻano ʻokoʻa kou ʻili ma mua o ka mea maʻamau. Akā e hoʻomanaʻo, ʻaʻole kēia he maʻi weliweli.
ʻO ka mea nui loa, ʻo ia ke ʻike i ke kauka inā loaʻa iā ʻoe kēia mau hōʻailona a ʻike i ke kumu pololei . I kekahi manawa, ʻaʻole paha e maopopo ke kumu. ʻOiai inā ʻōlelo ʻoe ʻaʻole pono ʻoe i ka lāʻau lapaʻau, inā ʻoe e ʻike nei i kekahi ʻeha noʻonoʻo ma muli o kēia loli o ke ʻano, hiki iā ʻoe ke kamaʻilio me kahi kākāʻōlelo olakino noʻonoʻo e pili ana i ia mea a kamaʻilio e pili ana i nā ala e kūkulu ai i ka manaʻo ponoʻī a me kahi kiʻi ponoʻī maikaʻi. ʻAʻole ʻoe hoʻokahi, a mai kānalua e kiʻi i ke kōkua.
ʻO ka Harlequin Syndrome, ʻōnaehana nerve, ka hou ʻana, ka ʻulaʻula, ka ʻōnaehana nerve autonomic, Horner Syndrome, nā maʻi laha ʻole











💬 Comments (0)
ʻAʻohe manaʻo i kau ʻia. Hoʻohui i kāu manaʻo ma ʻaneʻi no ka manawa mua.
Hoʻohui i kāu manaʻo