Tērā pea ka tino āwangawanga koe ina kitea he mate ira onge tōu e kiia nei ko te hATTR amyloidosis. He mate tino onge tēnei. E 50,000 noa iho ngā tāngata o te ao e pāngia ana e tēnei mate. He mea noa te mataku me te pōhēhē ina rongo koe mōna. I roto i ngā kupu māmā, ka puta tēnei mate i te whakarerekētanga o tētahi ira e kiia nei ko te TTR i roto i tō tātou tinana. Nō reira, ka whakatakotoria he momo pūmua rerekē e kiia nei ko te amyloid ki roto i ngā whekau pēnei i tō tātou ngākau, ngā whatukuhu, te pūnaha io, me te pūnaha puku. Kātahi ka kore e taea e aua whekau te mahi tika. Ina haere koe ki te tākuta mō te wā tuatahi, ka pātai atu ia ki a koe he maha ngā pātai. He mea tino nui kia rite koe i mua. Kātahi ka taea e koe me te tākuta te whiriwhiri i te maimoatanga pai rawa atu māu.
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Me pēhea te whakarite i mua i te haerenga ki te tākuta?
He mea tika kia aro atu ki ēnei āhuatanga i mua i te haerenga ki te tākuta.
Kia mōhio koe ki te hītori hauora o tō whānau
He mate ira te amyloidosis hATTR. I roto i te rongoā, he mate "autosomal dominant". Ko te tikanga, ki te mea kei tētahi o ō mātua te whakarerekētanga ira e puta ai tēnei mate, e 50% te tūponotanga ka riro mai i a koe. Mēnā kua kitea tētahi o ō mātua, he tuākana, he teina rānei, he tamaiti rānei kua pāngia e tēnei mate, he mea tino nui kia whakamātauria ō ira, ahakoa kāore he tohu.
Kia maumahara, ahakoa he mate tō tētahi o tō whānau, ehara i te mea ka tino pāngia koe e te mate. Engari mā te mōhio mēnā kei a koe te ira ka āwhina i a koe ki te whiwhi maimoatanga .
Tangohia ngā pūrongo whakamātautau katoa i mahia e koe.
Mena kua whai whakamātautau ira koe i mua hei rapu i te whakarerekētanga ira TTR, kōrero ki tō tākuta. Waihoki, ki te whakaūtia e ngā hua o tō whakamātautau kei a koe te ira, ka tūtohu tō tākuta i ētahi atu whakamātautau. Nā te mea ka pā pea te mate hATTR ki ētahi atu okana, pērā i te ngākau, te ate, me ngā whatukuhu. Mena kua whai whakamātautau ngākau (echocardiogram) koe, i ngā whakamātautau toto rānei, kia mauria mai aua pūrongo katoa.
Mauria mai he rārangi o ngā rongoā e tangohia ana e koe.
Ka hiahia tō tākuta ki te mōhio mō ngā rongoā katoa e tangohia ana e koe. Kei roto i tēnei ehara i te mea ko ngā mea kua tohua e tō tākuta anake, engari ko ngā rongoā whakamamae mamae, ngā huaora, me ngā tāpiringa ka taea te hoko kore utu.
Ngā pātai ka pātai pea te tākuta ki a koe
Mā te rite ki te whakautu i ō pātai ka āwhina i tō tākuta ki te whakatau i te maimoatanga pai rawa atu māu. Ka hoatu hoki he wā ki a koe ki te pātai i ō pātai katoa.
Anei tētahi whakarāpopototanga poto o ngā mea ka pātai atu pea te tākuta ki a koe.
| Wāhi pātai | Ngā mea ka pātaihia pea ki a koe, me ngā mea me mōhio koe |
|---|---|
| Hītori whānau mō te mate | "Kei te pāngia tētahi atu o tō whānau e te hATTR?" ka pātai rātou. Tērā pea kua pāngia tētahi o tō whānau e te mate manawa, te neuropathy haere whakamua , te mate carpal tunnel , ngā raruraru puku rānei. Tērā pea kua pāngia rātou e te hATTR, ā, kāore i te mōhio. Nō reira, tohaina atu ēnei mōhiohio ki a rātou. |
| Ngā whakamātautau ira me te tātaritanga | "Kua whakamātauria tō ira?" ka pātai rātou. He uaua te tautuhi i te hATTR nā te mea he maha ngā whekau e pā ana ki tēnei. Tērā pea ka tūtohu tō tākuta i ēnei whakamātautau e whai ake nei: he koiora (te tango i tētahi wahi kiko hei whakamātautau), he whakamātautau toto, he echocardiogram , he MRI ngakau rānei hei tirotiro i tō ngākau, me ngā whakamātautau kawe io hei tirotiro i te mahi a ngā io. |
| Ngā tohu e pā ana ki te ngākau | "Kei a koe ngā tohu pēnei i te tere o te manawa, te poto o te manawa, te uaua ki te whakakorikori tinana, te pupuhi rānei o ō waewae?" Ka taea e te hATTR te whakaemi i ēnei pūmua ki roto i te manawa, ka puta ai ngā mate manawa, ngā mate manawa, te matotoru rānei o te uaua manawa (hypertrophic cardiomyopathy) . Mena kei a koe ēnei tohu, ka tukuna tonutia koe ki tētahi tohunga ngakau. |
| Ngā raruraru tirohanga | "He rerekētanga kei roto i tō tirohanga, pērā i te rere o te ira?" Tata ki te 20% o ngā whakarerekētanga ira TTR ka pā ki ngā kanohi. Me tirotirohia e te tākuta kanohi ngā rerekētanga katoa o te tirohanga. |
| Ngā raruraru hīkoi me ngā raruraru io | "Kei te raru koe ki te hikoi?" Ko tētahi o ngā tohu tuatahi me te tino kitea o te mate hATTR ko te pakaru o ngā io i roto i ō ringaringa me ō waewae (peripheral neuropathy) . Ka puta pea ngā tohu pēnei i te mamae, te ngoikore, me te ngau. Mena kei te pāngia tō oranga e ēnei, me whakaaro pea koe ki ngā mea pēnei i te whakaora mahi . |
| Ngā raruraru o te pūnaha io motuhake | "He nui rawa tō werawera, he rerekē te mate korere me te mate puku, he uaua rānei ki te whakahaere i tō mimi?" He raruraru ēnei o te pūnaha io ā-roto , e whakahaere ana i ngā mea pēnei i te tere o te ngakau, te toto toto, me te nakunaku kāore e taea e tātou te whakahaere. Mēnā kei te pāngia koe e ēnei tohu, he tohu pea tēnei kei te kino haere tō āhua hATTR. |
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Check Availability →Ka kōrero anō te tākuta mō ngā tikanga maimoatanga.
I muri i te whakaū i tō āhua, ka matapakihia e te tākuta ngā kōwhiringa maimoatanga ki a koe.
Kua tangohia e koe tō rongoā?
He maha ngā rongoā kua whakaaetia i tēnei wā hei whakahaere i te hATTR me te whakaroa i tōna whanaketanga. Ko ētahi tauira ko Eplontersen (Wainua), inotersen (Tegsedi), patisiran (Onpattro), vutrisiran (Amvuttra), tafamidis (Vyndamax), me tafamidis meglumine (Vyndaqel). He mea nui kia kōrero ki tō tākuta mēnā kua whakamahia e koe tētahi o ēnei rongoā i mua, mēnā i āwhina i a koe, mēnā rānei i pā mai he pānga taha.
He aha ō whakaaro mō te whakawhitinga ate?
Mō ngā tekau tau, ko te rongoā pai rawa atu mō te hATTR ko te whakawhitinga ate. Engari he nui te mōrearea o ngā raruraru, inā koa ngā raruraru o te ngākau. E whakaatu ana ngā rangahau hou he rite tonu te whai huatanga o ētahi rongoā hou ki te whakawhitinga ate. Nō reira, ka taea e koe te kōrero ki tō tākuta mō ngā painga me ngā huakore o tēnei pokanga me ētahi atu maimoatanga.
Kei te hiahia koe ki te whai wāhi ki tētahi whakamātautau haumanu?
Kei te rapu tonu ngā tākuta i ngā huarahi pai ake hei tiaki i ngā tūroro hATTR. Ko tētahi huarahi hei mahi i tēnei ko ngā whakamātautau haumanu. Kua whakamatautauria ngā rongoā katoa kua whakaaetia i tēnei rā i tēnei ara. He whai wāhitanga nui tēnei ki te whiwhi i tētahi maimoatanga hou i mua i te wātea ki te marea whānui. Engari he tūponotanga kei reira. Ka taea e koe te pātai atu ki tō tākuta mō tēnei mea anō hoki.
Karere Tangohia ki te Kāinga
- He mate onge, he mate tuku iho te hATTR amyloidosis . He mea noa te manukanuka ina rongo koe i tēnei mate.
- Ina haere koe ki te tākuta, me mauria mai tō hītori hauora whānau, ngā hua o ngā whakamātautau i tangohia e koe, me te rārangi o ngā rongoā e tangohia ana e koe.
- Kōrerotia ō tohumate ki tō tākuta (mamae o te uma, uaua ki te manawa, ngoikore o ō waewae me ō waewae, ngā panonitanga o tō tirohanga) me te kore e huna i tetahi mea.
- Kōrero māhorahora ki tō tākuta mō ngā kōwhiringa maimoatanga (rongoā, pokanga, rangahau hauora) me te pātai i ō pātai katoa.
- Mā te tautuhi tika i te mate me te whiwhi i te maimoatanga tika, ka taea e koe te ora angitu me tēnei mate.
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