He aha ka POEMS Syndrome? Nā Hōʻailona, Nā Kumu, a me ka Lapaʻau

ʻO ka POEMS syndrome kahi maʻi koko maʻamau loa e pilikia ana i nā ʻāpana like ʻole o kou kino i ka manawa hoʻokahi. Loaʻa iā ia kona inoa mai nā hiʻohiʻona nui ʻelima āna e hana ai: Polyneuropathy (poino o nā aʻalolo), Organomegaly (nā kino nui), Endocrinopathy (nā pilikia hormone), Monoclonal protein (nā protein kūpono ʻole), a me nā loli o ka ʻili.

Hana ʻia kēia kūlana ke hoʻomaka nā sela koko i kapa ʻia ʻo plasma cells e hana kūpono ʻole. Hana nui kēia mau sela i kahi protein e hiki ke hōʻino i kou mau aʻalolo, nā kino, a me nā ʻōnaehana kino ʻē aʻe. ʻOiai he pilikia nui ka POEMS syndrome, hiki i ka hoʻomaopopo ʻana iā ia ke kōkua iā ʻoe e hana pū me kāu hui olakino e hoʻokele pono ai.

He aha ka POEMS syndrome?

ʻO ka POEMS syndrome kahi maʻi multisystem i hana ʻia e nā sela plasma kūpono ʻole i loko o kou iwi ʻiwi. Hana nui kēia mau sela i kahi protein e holo ana i loko o kou koko a hana i ka hōʻino nui ma kou kino holoʻokoʻa.

Hoʻopilikia kēia kūlana i ka liʻiliʻi ma mua o 1 i 100,000 mau kānaka, e hana ana iā ia he mea maʻamau loa. Hoʻomaka maʻamau ia i nā mākua ma waena o 40 a me 60 mau makahiki, ʻoiai hiki ke hana i kēlā me kēia makahiki. ʻOi aku ka nui o nā kāne e loaʻa ai ka POEMS syndrome ma mua o nā wāhine.

ʻO ka mea e pilikia ai kēia kūlana, ʻaʻole ia e hoʻopilikia wale i hoʻokahi ʻōnaehana kino. Ma kahi o ia mea, hana ia i nā pilikia i kou ʻōnaehana aʻalolo, ʻōnaehana endocrine, koko, ʻili, a me nā kino ʻē aʻe i ka manawa hoʻokahi.

He aha nā hōʻailona o ka POEMS syndrome?

Hiki i nā hōʻailona o ka POEMS syndrome ke manaʻo nui no ka mea hoʻopilikia lākou i nā ʻāpana like ʻole o kou kino. E hele kākou ma nā mea āu e ʻike ai, e hoʻomanaʻo ana ʻaʻole nā ​​​​kānaka a pau e loaʻa nā hōʻailona a pau.

ʻO ka hōʻailona maʻamau loa a me ka mea mua āu e ʻike ai ʻo ia ka hōʻino ʻana o nā aʻalolo, ʻoi aku hoʻi i kou mau lima a me kou mau wāwae:

• Numbness a me ka tingling e hoʻomaka ana i kou mau manamana lima a me kou mau manamana wāwae
• Nāwaliwali i kou mau lima a me kou mau wāwae e hana ai i ka paʻakikī e hopu i nā mea a i ʻole e hele
• Ke kuni a i ʻole ka ʻeha ʻana i kou mau lima a me kou mau wāwae
• Nāwaliwali o nā ʻiʻo e pālahalaha mālie ana i luna o kou mau lālā
• Nā nalowale o nā reflexes, ʻoi aku hoʻi i kou mau kuʻekuʻe wāwae a me kou mau kuli

Hoʻomau pinepine kēia mau pilikia aʻalolo i ka manawa a hiki ke hoʻopilikia nui i kāu mau hana i kēlā me kēia lā. Hoʻomaka pinepine ka nāwaliwali i ka liʻiliʻi akā hiki ke holomua i kahi e paʻakikī ai ke hele.

Hiki i kou ʻili ke hōʻike i kekahi mau loli kūikawā:

• ʻEleʻele o kou ʻili, ʻoi aku hoʻi i nā wahi e pelu ai e like me kou ʻāʻī a me kou mau ʻūhā
• ʻO ka mānoanoa o kou ʻili e like me ka ʻili i ka pā
• Nui ka ulu o ka lauoho ma kou maka, mau lima, a i ʻole nā ​​wāwae
• Nā wahi ʻulaʻula liʻiliʻi ma kou ʻili i hana ʻia e nā kīʻaha koko haki
• Ke keʻokeʻo ʻana o kou mau kui a i ʻole nā ​​loli kui

Nui nā kānaka me ka POEMS syndrome e ʻike pū ana i nā hōʻailona pili hormone. Hoʻokele kou ʻōnaehana endocrine i nā hana nui, no laila ke hoʻopilikia ʻia, hiki iā ʻoe ke ʻike i nā loli i kou ikehu, manaʻo, a me kou ola maikaʻi holoʻokoʻa.

Hiki i nā hōʻailona ʻē aʻe ke komo pū me ka luhi mau, ka pōkole o ka hanu, ka pehu ʻana i kou mau wāwae a i ʻole ka ʻōpū, a me nā loli i kou ʻike.

He aha ka mea e hana ai i ka POEMS syndrome?

Hoʻomaka ka POEMS syndrome ke lilo nā sela plasma i loko o kou iwi ʻiwi i mea kūpono ʻole a hoʻomaka e hana nui i kahi protein kikoʻī. ʻO kēia mau sela plasma he ʻāpana maʻamau o kou ʻōnaehana pale a kōkua i ka hakakā ʻana i nā maʻi ma o ka hana ʻana i nā antibodies.

I ka POEMS syndrome, hoʻomaka kēia mau sela e hana i nā nui o kahi protein monoclonal. Holo kēia protein ma o kou kahe koko a hana i ka mumū a me ka hōʻino i kou mau aʻalolo, nā kino, a me nā pūnaewele ʻē aʻe. E noʻonoʻo e like me ka loaʻa ʻana o kahi hale hana e manaʻo ʻia e hana i nā huahana kōkua akā hoʻomaka e hana i kahi mea hōʻino.

ʻAʻole maopopo loa ke kumu o ka lilo ʻana o kēia mau sela plasma i mea kūpono ʻole. ʻAʻole ia he mea āu e hoʻoilina mai kāu mau mākua, a ʻaʻole ia i hana ʻia e kekahi mea āu i hana ai a i ʻole ʻaʻole i hana.

I ka wā e ʻike ai i ke kauka no ka POEMS syndrome?

Pono ʻoe e ʻike i ke kauka inā ʻoe e ʻike ana i ka numbness mau, tingling, a i ʻole nāwaliwali i kou mau lima a me kou mau wāwae, ʻoi aku hoʻi inā ʻoi aku ka nui o kēia mau hōʻailona i ka manawa.

He mea nui hoʻi ke ʻimi i ka mālama olakino inā ʻoe e ʻike i nā loli ʻili wehe ʻole, ʻoi aku hoʻi ka ʻeleʻele a i ʻole ka mānoanoa o kou ʻili. ʻOiai hiki i kēia mau loli ke loaʻa i nā kumu he nui, ke hana pū lākou me nā hōʻailona aʻalolo, pono lākou i ka noiʻi.

Mai kali e ʻike i ke kauka inā ʻoe e ʻike ana i ka pōkole o ka hanu, ka pehu nui i kou mau wāwae a i ʻole ka ʻōpū, a i ʻole ka luhi mau e hoʻopilikia ana i kāu mau hana i kēlā me kēia lā.

He aha nā pilikia o ka POEMS syndrome?

Hiki i ka POEMS syndrome ke alakaʻi i nā pilikia koʻikoʻi inā waiho ʻole ʻia, akā hiki i ka hoʻomaopopo ʻana i kēia mau mea hiki ke kōkua iā ʻoe e hana pū me kāu hui olakino e pale a hoʻokele pono ai.

Hiki i ka hōʻino ʻana o nā aʻalolo e pili ana i ka POEMS syndrome ke holomua e hana i ka hōʻino nui. Ma waho o ka lapaʻau, hiki i ka nāwaliwali i kou mau lima a me kou mau wāwae ke ʻoi aku ka nui i kahi e paʻakikī ai ʻoe ke hele a hana i nā hana i kēlā me kēia lā.

Hiki ke hoʻomohala i nā pilikia naʻau a me nā māmā:

• Ka wai e hōʻiliʻili ana a puni kou naʻau a i ʻole nā ​​māmā
• Ke koko kiʻekiʻe i kou mau māmā
• Nā pilikia o ka naʻau
• Ka paʻakikī o ka hanu, ʻoi aku hoʻi ke moe pālahalaha

Hiki i kēia mau pilikia ke hoʻoweliweli i ke ola a pono i ka mālama olakino koke. ʻO ka ʻoiaʻiʻo maikaʻi, me ka lapaʻau kūpono, hiki ke pale ʻia a hoʻihoʻi ʻia nā pilikia he nui.

Pehea e hōʻike ʻia ai ka POEMS syndrome?

Pono ka hōʻike ʻana i ka POEMS syndrome i ka loiloi piha no ka mea hoʻopilikia kēia kūlana i nā ʻōnaehana kino he nui. Pono kāu kauka e hōʻoia iā ʻoe he nui nā hiʻohiʻona nui ma mua o ka hana ʻana i kēia hōʻike.

Hoʻomaka maʻamau ke kaʻina hana hōʻike me ka moʻolelo olakino kikoʻī a me ka nānā kino. E nīnau kāu kauka e pili ana i kou mau hōʻailona, ​​ke hoʻomaka ʻana, a pehea lākou i loli ai i ka manawa. E nānā pū lākou i kou ʻili, e ho'āʻo i kou mau reflexes, a e nānā i nā kino nui.

He mea nui nā ho'āʻo koko no ka hōʻike ʻana a e komo pū me:

• Nā ho'āʻo e ʻike i ka protein monoclonal kūpono ʻole
• Nā ana o ka pae hormone
• Nā ho'āʻo e nānā i kāu hana o ka puʻupaʻa a me ke akepaʻa
• Helu koko piha e loiloi i kou mau sela koko

E kauoha pū kāu kauka i nā haʻawina alakaʻi aʻalolo e ana i ka hana maikaʻi o kou mau aʻalolo. Komo kēia mau ho'āʻo i nā impulse uila liʻiliʻi e kōkua i ka hoʻoholo ʻana i ka nui o ka hōʻino ʻana o nā aʻalolo.

He aha ka lapaʻau no ka POEMS syndrome?

Hoʻokumu ka lapaʻau no ka POEMS syndrome i ka hoʻemi ʻana i nā sela plasma kūpono ʻole a me ka hoʻokele ʻana i nā hōʻailona a lākou e hana ai. ʻO ka ʻoiaʻiʻo maikaʻi, me ka lapaʻau kūpono, nui nā kānaka e ʻike i ka hoʻomaikaʻi nui ʻana i kā lākou mau hōʻailona.

Hoʻokomo ka ʻano lapaʻau nui i nā therapies e hoʻopili i nā sela plasma kūpono ʻole i loko o kou iwi ʻiwi. Hoʻohālikelike ʻia kēia mau lapaʻau i nā mea i hoʻohana ʻia no nā maʻi koko ʻē aʻe a ua hōʻike ʻia he mea maikaʻi loa no ka POEMS syndrome.

Hoʻohana pinepine ʻia nā lāʻau chemotherapy e hoʻemi i ka nui o nā sela plasma kūpono ʻole. Hana kēia mau lāʻau ma o ka hoʻopili ʻana i nā sela e hoʻokaʻawale koke ana, me nā sela plasma e hana ana i kou mau hōʻailona.

Pehea e hoʻokele ai i ka POEMS syndrome ma ka home?

ʻOiai he mea nui ka mālama olakino no ka POEMS syndrome, aia kekahi mau mea āu e hiki ke hana ma ka home e kōkua i ka hoʻokele ʻana i kou mau hōʻailona a hoʻomaikaʻi i kou ola maikaʻi.

ʻO ka mālama ʻana i kou mau aʻalolo i hoʻopilikia ʻia he mea nui loa. Hiki i nā hana māmā a me ka lapaʻau kino ke kōkua i ka mālama ʻana i ka ikaika o nā ʻiʻo a me ka palupalu. Hiki i kāu kauka a i ʻole kauka lapaʻau kino ke hōʻike iā ʻoe i nā hana kūikawā e palekana a pōmaikaʻi no kou kūlana.

Pehea ʻoe e hoʻomākaukau ai no kāu hālāwai kauka?

Hiki i ka hoʻomākaukau ʻana no kāu hālāwai kauka ke kōkua i ka hōʻoia ʻana e loaʻa iā ʻoe ka mea maikaʻi loa mai kāu kipa a mai poina e kūkākūkā i nā pilikia a i ʻole nā ​​nui nui.

Ma mua o kāu hālāwai, e kākau i kou mau hōʻailona a pau, me ka manawa i hoʻomaka ai a pehea lākou i loli ai i ka manawa. E kikoʻī e pili ana i nā mea e like me ka wahi o ka numbness a i ʻole ka ʻeha, ka nui o ka nāwaliwali, a me nā loli ʻili āu i ʻike ai.

He aha ka mea nui e pili ana i ka POEMS syndrome?

ʻO ka POEMS syndrome kahi kūlana maʻamau akā koʻikoʻi e hoʻopilikia ana i nā ʻōnaehana kino he nui i ka manawa hoʻokahi. ʻOiai hiki iā ia ke hana i nā hōʻailona a me nā pilikia nui, ua hoʻomaikaʻi nui ka manaʻo no nā kānaka me kēia kūlana me nā lapaʻau hou.

ʻO ka mea nui loa e hoʻomanaʻo ai ʻo ia ka hōʻike mua ʻana a me ka lapaʻau hiki ke hana i kahi ʻokoʻa nui i kāu hopena. Nui nā kānaka me ka POEMS syndrome e ʻike i ka hoʻomaikaʻi nui ʻana i kā lākou mau hōʻailona me ka lapaʻau kūpono, a loaʻa i kekahi poʻe ka remission piha.

Nā nīnau pinepine e pili ana i ka POEMS syndrome

He kanesa anei ka POEMS syndrome?

ʻAʻole he kanesa ka POEMS syndrome ma ke ʻano maʻamau, akā pili ia i nā sela plasma kūpono ʻole i loko o kou iwi ʻiwi. Hana kēia mau sela i nā protein hōʻino akā ʻaʻole pinepine lākou e pālahalaha i nā ʻāpana ʻē aʻe o kou kino e like me nā sela kanesa.

Hiki ke ho'ōla ʻia ka POEMS syndrome?

ʻOiai ʻaʻohe lāʻau hoʻōla maopopo no ka POEMS syndrome, nui nā kānaka e loaʻa ka remission lōʻihi me ka lapaʻau kūpono. ʻO ia hoʻi, hoʻomaikaʻi nui a nalowale paha kā lākou mau hōʻailona.

Pehea ka lōʻihi o ka lapaʻau e hana ai?

ʻO ka manawa no ka hoʻomaikaʻi ʻana e ʻokoʻa mai ke kanaka a i ke kanaka, akā nui nā kānaka e hoʻomaka e ʻike i ka hoʻomaikaʻi ʻana i kā lākou mau hōʻailona i loko o kekahi mau mahina ma hope o ka hoʻomaka ʻana o ka lapaʻau.

Pono anei iaʻu ka lapaʻau no ke koena o koʻu ola?

ʻO ka lōʻihi o ka lapaʻau e hilinaʻi ana i ka maikaʻi o kou pane ʻana i ka therapy a inā paʻa kāu kūlana. Pono kekahi poʻe i ka lapaʻau mau e mālama i kā lākou mau hōʻailona ma lalo o ka mana, ʻoiai hiki i kekahi ke ho'ōki i ka lapaʻau inā loaʻa iā lākou ka remission. E hana pū kāu kauka me ʻoe e hoʻoholo i ke ala lōʻihi maikaʻi loa no kāu kūlana kikoʻī.

Hiki iaʻu ke loaʻa nā keiki inā loaʻa iaʻu ka POEMS syndrome?

ʻAʻole pale aku ka loaʻa ʻana o ka POEMS syndrome iā ʻoe mai ka loaʻa ʻana o nā keiki, akā he mea nui ke kūkākūkā me kāu kauka ma mua o ka ho'āʻo ʻana e hāpai. Hiki i kekahi mau lapaʻau no ka POEMS syndrome ke hoʻopilikia i ka fertility a i ʻole hiki ke hōʻino i ka wā hāpai.