Te mamae o ngā hononga i whakapōuri i tōna ao i muri i tana wikitoria i te whakataetae kanikani o te ao: Ngā mea me mōhio koe mō te Ankylosing Spondylitis (AS)

He maha ngā mamae o tō tuara me ō hononga? He mārō, he koretake hoki tō āhua ina ara ake koe i te moenga i te ata? Tērā pea ka whakaaro koe he mea noa tēnei e puta mai ana i te ngenge me te koroheketanga. Engari ehara i te mea he noa ngā mamae katoa. I tēnei rā kei te kōrero tātou mō tētahi kōrero pēnei. Koinei te kōrero mō Alicia Graff Mack, he kaihaka rongonui o te ao. E pā ana tēnei ki tētahi mate i tino pā ki tana mahi kanikani, ā, i mutu ai ia, engari i te mutunga i whakakaha i a ia.

"I whakangungu ahau pērā i te kaitākaro Ōrimipia, engari kāore te mamae i memeha"

E 10 tau te pakeke o Alicia i te wā i tangohia ai e ngā tākuta te wai mai i tōna turi. Mai i taua wā, kua neke atu i te tekau tau ia e mamae ana i te mamae, kua maha ngā pokanga i mahia, ā, kua tahaetia tōna wā utu nui hei kanikani ngaio. I roa te wā ki te mōhio he aha te take o te mate. Ko te mate ko te Ankylosing Spondylitis (AS) . He māmā noa iho, he mate rumatiki e puta ana ina whakaekehia e te pūnaha ārai mate o tō tātou tinana ō tātou hononga.

I ētahi rā ka pupuhi ōna turi, pērā i te rēmana. Kāore i taea e ia te hikoi tika. Kāore i taea e ia te whakaaro ki te kanikani i roto i ngā hū motuhake i whakamahia e ia mō te kanikani.

E kore e taea te tatau i ngā wā i whakaaro ai ia, "E kore rawa ahau e kanikani anō."

I a ia e tamariki ana, e whakangungu ana hei kaihaka kanikani pūkenga, kāore ia i aro nui ki ēnei tohu. E ai ki tāna, "I whakangungu ahau pērā i te kaihaka Ōrimipia. Nō reira he mea noa te mamae me te ngaunga. Koinei te mea e pā ana ki te nuinga o ngā kaihaka i ngā wā katoa."

Engari i haere tonu te kino haere o ōna tohu. Ahakoa i muri i te pokanga mō te pakaru iti o te kiriuhi i roto i tōna turi me te whakaora tinana, kāore te mamae i memeha. Kāore i taea e ia te hikoi ki te teihana tereina raro whenua ki te tiki maimoatanga.

"Mō te ono marama i muri i te pokanga, kāore tetahi i taea te homai i tētahi whakautu ki ahau. Ko te moemoeā o tōku ao katoa i ahu mai i te hauora o tōku tinana. I tino noho ahau i te pito o raro o tōku ao," tana kī.

He aha rawa te Ankylosing Spondylitis (AS)?

Āe, me titiro tātou he aha tēnei mate e kiia nei ko te AS. He mate pūnaha ārai mate tēnei. Arā, ko te pūnaha e tiaki ana i tō tātou tinana mai i te mate ka tīmata hē ki te whakaeke i ō tātou ake pūtau hauora, inā koa ko ngā hononga.

Ko ngā hononga o te tuaiwi te mea nui ka pā ki te AS. Koinei te take e pakari ai, e mamae ai te tuara i te ata. I roto i te wā, ka pēhia ēnei hononga, ā, ka ngaro te ngāwari o te tuaiwi. Engari kāore i te tuaiwi anake. Ka pā anō hoki ki ētahi atu hononga o te tinana, pērā i ngā turi, ngā hope, me ngā pona waewae. Koinei te mea i pā ki a Alicia.

Ko tētahi take he uaua ki te tautuhi i tēnei mate, he rite tonu ngā tohu tōmua ki ngā mamae tinana noa.

I rerekē te ara i haere ai te ao, engari kāore au i whakarērea taku moemoeā.

I te memeha haere o ana moemoeā kanikani, ka tīmata a Alicia ki te whakaaro mō tētahi atu oranga. I whakauru ia ki te whare wānanga me te whakaaro ki te whai i tētahi mahi whakahaere toi. I taua wā tonu, i haere tonu tana whiwhi i ngā mahi whakaora tinana me ngā rongoā. I āta haere, ka kaha haere tōna tinana. I tana tau whakamutunga o te whare wānanga, ka taea e ia te hoki ki ngā akomanga kanikani, hei whakangahau i a ia anō.

I a ia e rapu mahi ana i tētahi kamupene pai i muri i tana whakawhiwhinga tohu, kotahi te raumati i wātea ai ia. I whakatata atu ia ki tētahi kamupene kanikani rongonui i Niu Ioka, me te tumanako ka whiwhi mahi ia i roto i te tari whakahaere, i te tari hokohoko rānei.

Engari he whakaaro kē atu anō ā ngā kaiwhakaū o taua rōpū. "I rongo mātou kei te kanikani anō koutou. He haerenga tā mātou ki Itari, ā, kua pāngia tētahi o ā mātou kaihaka e te aituā. Ka taea e koe te hono mai anō ki a mātou?"

I te tīmatanga i mataku a Alicia. Kua roa te wā mai i tana kanikani wā-katoa, i tana mahi whakaari rānei i ngā kōnohete. Engari koinei pea tōna wā whakamutunga. "I whakaaro ahau, 'Ka noho ahau ki tētahi tēpu mō te toenga o tōku ao. E hiahia ana ahau ki te mahi i tēnei i mua i taua wā.'"

I whakamahia e ia taua whai wāhitanga ka hoki anō ki te papa kanikani.

Te tautuhi tika i te raruraru kanohi

I te roanga o te wā, ka tīmata te pōuri o te tirohanga a Alicia, ka whero, ka mamae hoki ōna kanohi. Koinei te tohu tuatahi kua pāngia ia e te AS.

Kua pāngia ōna kanohi e te mate e kiia nei ko te uveitis , he mumura o te kanohi. I whakamārama tana tākuta mate rumatiki he mate noa te uveitis i roto i te hunga whai AS. Koinei anake te huarahi hei whakaū ko tōna mate he AS, ehara i te rumatiki tauhohe.

I te kitenga tika i te mate, ka tīmata ia i te maimoatanga e tika ana mōna. Ka tīmata ia ki te tango i tētahi rongoā ārai rūmātiki whakarerekē mate (DMARD) pērā i a Adalimumab (Humira) . Engari i puta mai ngā wero hou. "Me haereere au i ia whenua ki ia whenua me ngā werohanga. Te pupuri i aua werohanga kia makariri i ngā rerenga 18-hāora te roa, te tirotiro mēnā he pouaka whakamātao kei ngā hōtēra i noho ai au, me te kawe i te rongoā ki te hōtēra i te wā tika... he kanikani anō!" e kī ana ia me te kata.

Nā te maimoatanga tika, i taea e ia te kanikani ngaio mō ētahi atu tau e 5-6. "He manaakitanga kāore au i whakaaro," tana kī. I tēnei rā, ko ia te tumuaki me te kaiwhakahaere o te tari kanikani i te Kura Juilliard rongonui o te ao.

"Kei te tango tonu ahau i a Humira, ā, ina pā mai te mate, ka tango ahau i ētahi rongoā pēnei i te prednisone," tana kī. "I te nuinga o ngā rā ka tino pakari taku tuara me ōku hope. Engari kei te kaha tonu taku mahi."