Ua ʻike au he paʻakikī ke ola ʻana me ka ankylosing spondylitis, a i ʻole AS no ka pōkole, i kekahi manawa. ʻO kēlā me kēia mea i loaʻa iā ia, ʻike lākou i ka paʻakikī o ka hele ʻana i ka lā me ke kua mau a me ka ʻeha hui a me ka ʻoʻoleʻa o ke kakahiaka. Akā, ʻaʻole ʻoe hoʻokahi. Nui nā ala a me nā kumuwaiwai e hiki ke kōkua iā ʻoe, hāʻawi iā ʻoe i ka ikaika, a hāʻawi iā ʻoe i ka ʻike hou ma kēia huakaʻi. ʻO ia ka mea a mākou e kamaʻilio nei i kēia lā.
No ke aha he mea nui kēia ʻano kākoʻo iā ʻoe?
I ka ʻōlelo maʻalahi, he maʻi laha ʻole ka AS e hiki ke hoʻopilikia i nā ʻano he nui o kou ola. No ka mea he maʻi mau loa ia, he mea nui e lawe i ka lāʻau lapaʻau i ka manawa kūpono a aʻo e noho me ia. ʻO kēia kahi e pono ai nā hui kākoʻo a me nā kumu ʻike hilinaʻi.
E noʻonoʻo i ka hōʻoluʻolu o ka hiki ke kamaʻilio me kekahi e hoʻomaopopo ana i ka ʻeha āu e manaʻo nei a me nā pilikia āu e kū nei. A pehea ka maʻalahi o kou ola inā ʻoe e aʻo e pili ana i nā lāʻau lapaʻau hou loa a me nā ala maʻalahi e hoʻokele ai i kāu mau hōʻailona. ʻO ia ke kumu he mea nui ka ʻike ʻana i nā kumuwaiwai e like me kēia.
Ma hea e loaʻa ai iaʻu ke kākoʻo a me ka ʻike?
Aia kekahi mau wahi e hiki ke kōkua iā ʻoe a kuhikuhi iā ʻoe ma ke ala kūpono. Hiki i kekahi o kēia mau hui ke hui maka a maka. Hiki i kekahi ke hana ma ka pūnaewele wale nō. Pono ʻoe e koho i ke ʻano hana i kūpono loa iā ʻoe.
| Ma hea e loaʻa ai ke kōkua | ʻO ke kākoʻo āu e loaʻa ai |
|---|---|
| ʻO kāu kauka. | ʻO ke kanaka maikaʻi loa e nīnau ai e pili ana i nā hui kākoʻo hilinaʻi a i ʻole nā kumuwaiwai i kūpono i kou kūlana. |
| ʻO ka haukapila a i ʻole ke keʻena lapaʻau kahi āu e mālama ʻia nei | He nui nā haukapila i loaʻa nā papahana kākoʻo kūikawā a i ʻole nā papahana hoʻomaopopo no nā maʻi. E nānā iā lākou. |
| Nā Kikowaena Ola Kaiaulu | Hiki iā ʻoe ke loaʻa ka ʻike e pili ana i nā papahana olakino like ʻole ma o nā kikowaena e like me kēia ma kou wahi. |
| Nā kumu lapaʻau o nā kulanui | I kekahi manawa aʻo mākou e pili ana i nā papahana i kālele ʻia i ka mea maʻi ma o nā kulanui noiʻi. |
Ma mua o ke koho ʻana i kahi hui, e hana i kekahi noiʻi e pili ana i nā mea a ka hui e kālele ana, pehea lākou e hui ai (ma ka pūnaewele a ma ke kino paha), a me ka mea nāna e alakaʻi i ka hui.
E makaʻala i kēia mau mea i ka wā e hele ai ma ka pūnaewele!
I kēia mau lā, hiki iā ʻoe ke loaʻa ka nui o ka ʻike ma nā pāpili kaiapili e like me Facebook a me YouTube. Hiki iā ʻoe ke heluhelu a nānā i nā ʻike o ka poʻe e noho ana me AS, nā mea a lākou e hana ai. Hiki i kēia mau mea ke hōʻoluʻolu. Eia nō naʻe, he wahi kēia e pono ai ʻoe e makaʻala loa .
E hoʻomanaʻo, mai lawe i kekahi mea āu e ʻike ai ma ka pūnaewele, ʻoiai ka ʻike pilikino o kekahi, ma ke ʻano he ʻōlelo aʻoaʻo lapaʻau. He mea nui e kamaʻilio me kāu kauka ma mua o ka hoʻāʻo ʻana i kekahi mea.
I ke nānā ʻana i ka ʻike ma ka pūnaewele, e nīnau iā ʻoe iho i kēia mau nīnau:
- ʻO wai ka mea e mālama nei i kēia pūnaewele a i ʻole ka ʻaoʻao Facebook? Ke mālama ʻia nei e kahi hui lapaʻau i ʻike ʻia, a i ʻole e kekahi mea i ʻike ʻole ʻia?
- Ke hoʻāʻo nei lākou e kūʻai aku i kekahi mea? I kekahi manawa hoʻāʻo lākou e kūʻai aku i kā lākou huahana ma ka ʻōlelo ʻana i nā mea e like me "E hoʻomaikaʻi kēia lāʻau lapaʻau iā ʻoe." Mai hoʻopunipuni ʻia e kēlā.
- He mea maikaʻi loa anei ia e lilo i mea ʻoiaʻiʻo? Inā ʻike ʻoe i kahi mea e like me "ʻO ka mea huna e ho'ōla ai iā AS i loko o 7 mau lā," he wahaheʻe paha ia.
- He mea hou anei kēia ʻike? Aia kekahi kumu ʻepekema? E nānā e ʻike inā ua hoʻokumu ʻia ka ʻike i paʻi ʻia ma muli o ka noiʻi a ua hou loa.
Nā hui honua a me nā pūnaewele i hilinaʻi ʻia
He kakaikahi nō nā hui AS e pili pono ana iā Sri Lanka. Eia nō naʻe, aia nā hui honua nui e noiʻi ana i kēia maʻi a kōkua i nā maʻi ma ka honua holoʻokoʻa. ʻOiai aia kēia mau pūnaewele ma ka ʻōlelo Pelekania, hoʻopuka lākou i ka ʻike waiwai nui a pololei e pili ana i ka maʻi, nā lāʻau lapaʻau hou, ka hoʻoikaika kino, a pehea e noho ai me ka maʻi. Inā ʻike iki ʻoe i ka ʻōlelo Pelekania, e pono loa kēia mau mea.
- ʻAhahui Spondylitis o ʻAmelika (SAA):ʻO kēia kekahi o nā hui nui loa ma ʻAmelika Hui Pū ʻIa i hoʻolaʻa ʻia no ka spondylitis, me AS. Loaʻa i kā lākou pūnaewele (spondylitis.org) ka nui o nā ʻaha kūkā maʻi, nā hui kākoʻo, a me ka ʻike hou loa.
- Arthritis Foundation: He hui nui kēia e hāʻawi ana i ka ʻike e pili ana i nā ʻano āpau o ka arthritis. Loaʻa i kā lākou pūnaewele (arthritis.org) kahi ʻāpana i hoʻolaʻa ʻia no AS.
- ʻO ka Arthritis National Research Foundation: Kākoʻo lākou i ka noiʻi e ʻimi i kahi lāʻau lapaʻau no ka arthritis. Hiki iā ʻoe ke ʻike e pili ana i ka noiʻi hou loa ma kā lākou pūnaewele (curearthritis.org).
- ʻO ka National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS): He keʻena aupuni kēia no ʻAmelika Hui Pū ʻIa. He hilinaʻi loa ka ʻike i paʻi ʻia ma kā lākou pūnaewele (niams.nih.gov) a ua hōʻoia ʻia e ka ʻepekema.
Nā kaiāulu pūnaewele kahi e hiki ai iā ʻoe ke heluhelu i nā ʻike o haʻi
ʻAe nā kahua pāpili kaiapili iā ʻoe e hoʻopili me nā poʻe a puni ka honua e noho nei me AS e like me ʻoe. Hiki i ke kākoʻo āu e loaʻa ai ke lilo i kumu hoʻoikaika nui. Akā, e like me kaʻu i ʻōlelo ai ma mua, mai hoʻāʻo i kekahi mea me ka ʻole o ke kamaʻilio ʻana me kāu kauka.
| Paepae | Wehewehena |
|---|---|
| Inā ʻoe e ʻimi nei iā Ankylosing Spondylitis, e ʻike ʻoe i nā hui he nui. He mau hui pilikino kekahi, a pono ʻoe e noi e hui pū. Ma kēia mau mea, nīnau nā poʻe ʻē aʻe i nā nīnau a kaʻana like i nā ʻike. | |
| ʻO kēia kekahi wahi kaulana e kaʻana like i ka ʻike a me nā manaʻo. E lilo i lālā o ke kaiāulu i kapa ʻia ʻo `r/ankylosingspondylitis` kahi e hiki ai iā ʻoe ke nīnau a heluhelu e pili ana i nā ʻike o haʻi. | |
| Instagram / Twitter | Hiki iā ʻoe ke loaʻa nā pou pili me ka hoʻohana ʻana i nā hashtags e like me `#ankylosingspondylitis`, `#arthritis`, `#chronicpain`. Eia nō naʻe, pono ʻoe e makaʻala loa i ka pololei o ka ʻike ma kēia mau mea. |
Pehea ʻoe e nānā ai inā hilinaʻi ʻia kahi moʻokāki pūnaewele?
- E hoʻolohe i kou naʻau: Inā manaʻo hewa a hoʻopunipuni paha kekahi mea ke nānā ʻoe i ka moʻokāki, he hewa paha ia.
- E ʻimi i nā moʻokāki i hōʻoia ʻia: Loaʻa i nā moʻokāki mai nā hui nui a kaulana kahi māka polū ma ka ʻaoʻao o lākou, ʻo ia hoʻi he ʻoiaʻiʻo ka moʻokāki a ʻaʻole hoʻopunipuni.
- E nīnau i ka maikaʻi o ka ʻike: E like me ka mea i ʻōlelo ʻia ma mua, e noʻonoʻo mau i ka mea nāna e hana nei i kēia, ke kūʻai ʻia aku nei, a he ʻepekema anei.
Hiki i ka huakaʻi me kēia maʻi ke lilo i mea mehameha a paʻakikī i kekahi manawa. Akā me ka ʻike kūpono a me ke kākoʻo kūpono, hiki iā ʻoe ke hoʻokele maikaʻi i ke kūlana a ola i kahi ola hauʻoli.
Leka Lawe-Home
- ʻAʻole ʻoe hoʻokahi i kāu huakaʻi o ke ola ʻana me ka Ankylosing Spondylitis (AS). He mau tausani o nā poʻe ʻē aʻe, e like me ʻoe, e ola nei me kēia maʻi.
- ʻO kāu kauka lapaʻau kāu kumu ʻike maikaʻi loa. E kamaʻilio mua me ia e pili ana i kekahi mea.
- ʻOiai ʻo ka pūnaewele, ʻoi aku hoʻi ka pāpili kaiapili, he wahi maikaʻi loa ia e loaʻa ai ka ʻike, mai manaʻoʻiʻo i nā mea a pau āu e heluhelu ai. Mai manaʻo e pili ana ka ʻike pilikino o kekahi iā ʻoe.
- Ma mua o ka hoʻāʻo ʻana i kekahi hoʻoikaika kino hou, meaʻai, a i ʻole kekahi mea ʻē aʻe, e nīnau pono i kāu kauka inā kūpono ia iā ʻoe.
- ʻOiai ma ka ʻōlelo Pelekania nā pūnaewele o nā hui honua, ʻo ka ʻike ʻepekema pololei a lākou e hāʻawi ai e lilo ia i mea kōkua nui i ka hoʻonui ʻana i kou ʻike.
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