Manaʻo ʻoe e hakakā ana ʻoe me ka Ankylosing Spondylitis (AS) hoʻokahi wale nō? Eia ke kōkua!

ʻO Ankylosing Spondylitis, e like me kā mākou e kapa nei ma nā ʻōlelo lapaʻau, he mea paʻakikī iki paha iā ʻoe. I ka ʻōlelo maʻalahi, he ʻano arthritis kikoʻī ia e hoʻopilikia ai i ka iwi kuamoʻo a me kona mau hono pili. Ke noho nei me kēia maʻi lōʻihi, i kekahi manawa manaʻo paha ʻoe ʻo ʻoe wale nō ka mea e ʻike nei i kēia ʻeha a me ka ʻoluʻolu ʻole. Akā, ʻaʻole ʻoe hoʻokahi. Nui nā wahi a me nā ʻano hana e hiki ke kōkua iā ʻoe ma kēia huakaʻi, hāʻawi iā ʻoe i ka ʻike kūpono, a hui me nā poʻe i loaʻa nā ʻike like me ʻoe. ʻO ia ka mea a mākou e kamaʻilio nei ma kēia ʻatikala i kēia lā.

ʻO ka mea mua, he aha ka Ankylosing Spondylitis (AS)?

Ma mua o ko kākou komo ʻana i loko o kēia me ka hohonu, e hoʻomaopopo mua kākou i ke ʻano o kēia maʻi. ʻO ka Ankylosing Spondylitis (AS) kahi ʻano o ka maʻi ʻāʻī mumū. ʻO ke ʻano o ka "maʻi mumū" ʻo ia ke kumu o ka mumū i loko o ke kino. Hoʻopilikia nui ia i nā hono o kou iwi kuamoʻo .

E noʻonoʻo e pili ana i ia mea, ua hana ʻia ko kākou iwi kuamoʻo me nā iwi liʻiliʻi (vertebrae) i hoʻopaʻa ʻia ma luna o kekahi. Kōkua nā hono ma waena o kēia mau iwi iā mākou e kūlou, hoʻolōʻihi, a wili. I ka AS, hoʻouka hewa ka ʻōnaehana pale o ke kino i kēia mau hono olakino. ʻO ka hopena, pehu kēia mau hono, ʻeha, a paʻakikī. I ka hala ʻana o ka manawa, hiki i kēia mumū ke hoʻoulu i ka ulu ʻana o nā iwi hou i loko o ka iwi kuamoʻo, e hoʻohui pū ana i nā vertebrae, a nalowale loa ka hiki ke kūlou. Hiki i kēia ke hoʻomaka me ka paʻakikī o ka iwi kuamoʻo ke ala mua ʻoe i ke kakahiaka, a i ka hala ʻana o ka manawa, hiki ke hoʻopilikia i nā hono ʻē aʻe, e like me nā pūhaka a me nā poʻohiwi.

Ma hea ʻoe e loaʻa ai ke kākoʻo a me ka ʻike

I ke ola ʻana me ke kūlana e like me kēia, ʻo ka ikaika e loaʻa mai ana mai ka ʻike kūpono a me ke kākoʻo naʻau he mea waiwai ʻole ia. E nānā kākou i kekahi o nā wahi nui e hiki ai iā ʻoe ke loaʻa ke kōkua.

ʻO ka mea mua, kāu kauka.

ʻO kāu hoaaloha maikaʻi loa a me ke alakaʻi ma kēia huakaʻi, ʻo ia ke kauka lapaʻau. ʻAʻohe mea nui ka nui o kāu aʻo ʻana mai ka pūnaewele a me nā hoaaloha, ʻo ia wale nō ka mea ʻike pono i kou kūlana, nā lāʻau lapaʻau kūpono, nā lāʻau lapaʻau hou, a me nā hoʻoikaika kino āu e hana ai.

• Mai makaʻu e nīnau i ke kauka i nā nīnau a kānalua paha āu e loaʻa ai.
• Ma mua o ka hoʻāʻo ʻana i kahi mea āu i ʻike ai ma ka pūnaewele, e kamaʻilio me kāu kauka e pili ana i ia mea.
• Inā he loli i kāu mau hōʻailona, ​​inā loaʻa iā ʻoe ka ʻeha hou, e haʻi iā ia i nā mea āpau e pili ana.

He aha nā Pūʻulu Kākoʻo?

ʻO kahi hui kākoʻo kahi e hiki ai i nā poʻe ʻē aʻe me AS e like me ʻoe ke hui pū. Hiki ke hoʻonohonoho ʻia kēia mau mea ma ka pae haukapila a i ʻole hiki ke hana ma ka pūnaewele. Ma Sri Lanka, ʻoi aku ka maʻalahi o ka loaʻa ʻana o nā hui pūnaewele.

He aha nā pōmaikaʻi āu e loaʻa ai mai kahi hui e like me kēia?

• Mai manaʻo mehameha:ʻO ka manaʻo o "ʻAʻole wau wale nō ke kū nei i kēia" he kumu nui ia o ka ikaika.
• Hiki iā ʻoe ke kaʻana like i nā ʻike: Hiki iā ʻoe ke aʻo i nā hana liʻiliʻi a haʻi e hoʻohana ai e hoʻokele i ka ʻeha a maʻalahi i nā hana o kēlā me kēia lā.
• ʻO ka manaʻo o ka hōʻoluʻolu: ʻO ke kamaʻilio ʻana me kahi mea e hoʻomaopopo ana i kāu mau pilikia hiki ke lilo i mea hōʻoluʻolu nui.

E noʻonoʻo ʻelua i ka wā e ʻimi ai i ka ʻike ma ka pūnaewele!

I kēia mau lā, he moana ʻike ka Pūnaewele. Akā, ma loko o ia moana, aia nā momi a me nā ʻōpala a me nā mea weliweli hoʻi. Ke ʻimi nei ʻoe i ka ʻike e pili ana iā AS, e huli pinepine ʻoe i nā blog, nā ʻaha kūkā pūnaewele, a me nā pāpili kaiapili. Pono ʻoe e makaʻala loa ma laila.

Ma mua o ka hilinaʻi ʻana i kahi pūnaewele a i ʻole ke kaiāulu pūnaewele, e nīnau iā ʻoe iho i kēia mau nīnau.

Nā pūnaewele a me nā ʻoihana honua i hilinaʻi ʻia

ʻOiai ʻaʻohe hui nui i hoʻolaʻa ʻia no AS ma Sri Lanka, aia kekahi mau ʻoihana i ʻike ʻia ma ka honua e hāʻawi ana i ka ʻike ʻepekema. ʻOiai ʻo ka ʻike ma kēia mau mea ma ka ʻōlelo Pelekania, he waiwai nui ia.

• ʻAhahui Spondylitis o ʻAmelika (SAA): ʻO kēia ka hui alakaʻi ma ʻAmelika Hui Pū ʻIa i hoʻolaʻa ʻia no AS a me nā kūlana pili. Loaʻa i kā lākou pūnaewele ka nui o ka ʻike e pili ana i ka maʻi, nā lāʻau lapaʻau, a me nā hoʻoikaika kino.
• Arthritis Foundation: He hui nui kēia e hāʻawi ana i ka ʻike e pili ana i ka arthritis ma ke ʻano laulā. Loaʻa iā ia kahi ʻāpana kaʻawale ma AS.
• ʻO ka National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS): He keʻena olakino aupuni kēia no ʻAmelika Hui Pū ʻIa. He hilinaʻi loa ka ʻike a lākou e hāʻawi mai nei.

E makaʻala hoʻi kākou i nā pāpili kaiapili e like me Facebook a me Reddit.

Aia nā hui kūloko a me nā hui honua i hoʻolaʻa ʻia no nā maʻi AS ma nā kahua pāpili kaiapili e like me Facebook. He mau wahi maikaʻi kēia e kaʻana like i nā ʻike a nīnau i nā nīnau. Eia nō naʻe, he mea nui loa ka akahele i ʻōlelo ʻia ma luna nei ma ʻaneʻi.

• E hana ma muli o kou manaʻo naʻau: Inā ʻike ʻoe i kahi hui, ʻaoʻao, a i ʻole pou e like me ke kānalua a hoʻopunipuni paha, he mea kānalua paha ia. E pale i ia mau wahi.
• Mai huikau i ka ʻike pilikino me ka ʻōlelo aʻoaʻo lapaʻau: ʻOiai ua ʻōlelo kekahi, "Ua lawe au i kēia lāʻau lapaʻau a ua ʻoluʻolu," ʻaʻole ia he manaʻo he kūpono ia nou. Hiki paha ke lilo i mea weliweli nou. E hahai mau i ka ʻōlelo aʻoaʻo a kāu kauka no kekahi mea.
• E ʻimi i nā moʻokāki i hōʻoia ʻia: Loaʻa i nā ʻaoʻao Facebook o nā hui nui a kaulana kahi māka polū ma luna o lākou. ʻO ke ʻano kēia, ʻo kā lākou ʻaoʻao kūhelu ia. ʻOi aku ka hilinaʻi o ka ʻike mai ia mau wahi.

He paʻakikī ka noho ʻana me AS. Akā, ʻaʻole pono ʻoe e kū hoʻokahi iā ia. ʻO ka loaʻa ʻana o ka ʻike kūpono a me ke kākoʻo mai nā poʻe kūpono e hiki ai ke maʻalahi kēia huakaʻi nou.