He aha te Patisiran: Ngā Whakamahinga, te Inenga, ngā Pānga taha me ētahi atu

He rongoā motuhake te Patisiran i hangaia hei rongoā i tētahi āhua ira onge e kīia ana ko te amyloidosis i whakawhitiwhiti e te transthyretin tuku iho (hATTR). E pā ana tēnei āhua ki tō pūnaha io ina kohikohi ngā pūmua hē i tō tinana me te whakangaro i ō io.

Mēnā kua tātai koe, tētahi rānei e mōhio ana koe ki te hATTR, tērā pea kei te pōuri koe i ngā kupu rongoā me ngā whiringa rongoā. Mā tēnei aratohu koe e āwhina ki te mārama ki te patisiran i roto i ngā kupu māmā, kia māia ai koe ki ō whakatau hauora.

He aha te Patisiran?

He rongoā rēhitatanga te Patisiran e noho ana ki tētahi rōpū rongoā e kīia ana ko te RNA interference (RNAi) therapeutics. E mahi ana mā te aukati i tō ate ki te hanga i te pūmua hē e pā ana ki te hATTR amyloidosis.

Whakaarohia te patisiran hei karere ngota e kī ana ki ngā pūtau motuhake i tō ate kia mutu te whakaputa i te pūmua raruraru. Mā tēnei e āwhina ki te ārai i te whakangaro io atu me te whakaroa i te haere o ō tohu.

Ka tae mai te rongoā hei otinga wai e tukuna tika ana ki roto i tō toto mā te whakauru IV. Ka whiwhi koe i tēnei rongoā i tētahi whare hauora, i te nuinga o te wā ia toru wiki.

He aha te Patisiran e whakamahia ana?

Kua whakaaetia te Patisiran ki te rongoā i te amyloidosis i whakawhitiwhiti e te transthyretin tuku iho (hATTR) i roto i ngā pakeke. He āhua ira onge tēnei e whakaputa ana tō tinana i ngā pūmua transthyretin hē e kohikohi ana me te whakangaro i ō io.

Ko te hunga e pā ana ki te hATTR te nuinga o te wā ka pā ki te whakangaro io haere e pā ana ki tō rātou kaha ki te hikoi, ki te rongo i ngā kare i ō rātou ringa me ō rātou waewae, me te mahi i ngā mahi o ia rā. Ka pā ano te āhua ki tō ngākau, te pūnaha keri, me ētahi atu okana i te wā.

Ka tohua e tō tākuta te patisiran mēnā kua tātaihia koe ki te hATTR mā te whakamātautau ira me ētahi atu whakamātau motuhake. Kāore e whakamahia mō ētahi atu momo amyloidosis, ngā āhuatanga rānei o ngā io.

Me pēhea te mahi a Patisiran?

Ka mahi a Patisiran mā te whakamahi i tētahi tukanga koiora matatau e kīia ana ko te RNA interference hei whakaiti i te hanga o ngā pūmua transthyretin hē i tō ate. E kiia ana he rongoā tino whai hua mō te hATTR.

Ko te tikanga ka hangaia e tō ate ngā pūmua transthyretin, engari i roto i ngā tāngata e hATTR ana, he hē ēnei pūmua, ā, ka piri tahi. Ka haere ēnei pūmua ki roto i tō toto, ka whakatakoto ki ō io, tō ngākau, me ētahi atu kiko, ka pā te kino.

Kei roto i te Patisiran ngā wāhanga iti o ngā rauemi ira e whai ana i ngā tohutohu e whakamahia ana e ō pūtau ate ki te hanga transthyretin. Ka tae te patisiran ki tō ate, ka kī atu ki ngā pūtau kia mutu te whai i ēnei tohutohu hē.

He kaha rawa tēnei rongoā ki te whakaiti i ngā taumata transthyretin. E whakaatu ana ngā rangahau ka taea e ia te whakaiti i ēnei pūmua kino mā te 80% neke atu rānei i roto i te nuinga o ngā tāngata e whiwhi rongoā ana.

Me pēhea taku tango i te Patisiran?

Ka hoatu te Patisiran hei whakauru (IV) ia toru wiki i tētahi whare hauora. Kāore e taea e koe te tango i tēnei rongoā i te kāinga, nā te mea me mātakitaki tōtika me te whakarite motuhake.

I mua i ia whakauru, ka whiwhi koe i ngā rongoā i mua i te rongoā hei āwhina i te aukati i ngā tauhohenga pānga. Ko te tikanga ko te antihistamine, te corticosteroid, me te rongoā mamae. Ka hoatu e tō rōpū hauora ēnei rongoā ki a koe tata ki te 60 meneti i mua i tō whakauru patisiran.

Ka roa te whakauru patisiran tata ki te 80 meneti hei whakaoti. I tēnei wā, ka mātakitakihia koe mō ngā tohu o ngā tauhohenga whakauru, ka uru pea ki te whero, te poto o te manawa, te raruraru rānei o te uma.

Kāore koe e whai i ngā here kai motuhake i mua i tō maimoatanga. Heoi anō, he mea nui kia noho pai te wai me te okioki pai i mua i ia tūāki whakauru.

Kia Pēhea te Roa e Tango ai au i te Patisiran?

Ko te Patisiran te tikanga he rongoā wā-roa ka haere tonu koe i te wā e āwhina ana ki te whakahaere i ō tohumate hATTR me te pai o tō tinana ki te rongoā. Ko te nuinga o te tangata e hiahia ana ki te rongoā tonu hei pupuri i ngā painga.

Ka aroturukihia e tō tākuta tō ahunga whakamua mā ngā whakamātautau toto auau, ngā aromatawai mahi io, me ngā aromatawai kounga o te oranga. Mā ēnei arowhai e whakatau mēnā e mahi ana te patisiran i te pai mōu.

Ka tīmata ētahi tangata ki te kite i ngā whakapainga i roto i ō rātou tohumate i roto i ētahi marama i muri i te tīmatanga o te rongoā, i te wā e roa ake ai te kite i ngā painga mō ētahi atu. Ka mahi haere te rongoā, nō reira he mea nui te manawanui i te wā o te rongoā tuatahi.

Ka kōrero tō rōpū hauora ki a koe mō ngā whāinga rongoā, ā, ka whakatika i tō mahere tiaki i runga i te āhua o tō urupare ki te rongoā me ngā pānga taha ka pā ki a koe.

He Aha ngā Pānga Taha o te Patisiran?

Pērā i ngā rongoā katoa, ka taea e te patisiran te pānga taha, ahakoa kāore te katoa e pā ana ki a rātou. Ko te nuinga o ngā pānga taha ka taea te whakahaere, ā, ka aroturukihia koe e tō rōpū hauora i te wā o te rongoā.

Ko ngā pānga taha noa ka pā ki a koe ko ngā tauhohenga i te wā, i muri tata rānei i tō whakaurunga. Ka tūpono pea he āwangawanga, engari kua pai te whakarite o tō rōpū hauora ki te whakahaere i a rātou mēnā ka puta.

Ngā pānga taha noa:

• Te pūhi i ō ringa, i ō waewae rānei (peripheral edema)
• Ngā tauhohenga e pā ana ki te whakaurunga pērā i te whero, te mamae o te tuara, te whakapairuaki rānei
• Ngā mate i te ara rārangi o runga
• Ngā kōpiko uaua, ngā kōpiko rānei
• Te mamae tahi
• Te ngenge, te ngenge rānei atu i te tikanga
• Te whanoke, te māmā rānei
• Te whero o te kiri, te pūhi rānei

Ko ēnei pānga taha noa he ngawari, he āhua-pū, ā, he maha ngā wā ka pai ake i te wā e urutau ana tō tinana ki te rongoā. Ka taea e tō rōpū hauora te whakarato rautaki hei āwhina i te whakahaere i ēnei tohumate.

Ko ngā pānga taha nui ake, engari he onge, ka uru pea ki ngā tauhohenga pānga nui i te wā o te whakaurunga, te hekenga nui o te pēhanga toto, te rere toto rerekē rānei. Ahakoa he mea onge ēnei, ka aroturukihia e tō rōpū hauora i te wā o ia rongoā.

I te wā onge rawa, ka pā pea te whakahekenga o te huaora A i roto i ō rātou toto, ka pā ki te tirohanga i te pō. Ka aroturukihia e tō tākuta ō taumata huaora A, ā, ka tūtohu pea i ngā tāpiringa ki te hiahiatia.

Ko wai kāore e tika kia tango Patisiran?

Kāore a Patisiran e tika ana mō te katoa, tae atu ki te hunga e mate ana i te hATTR amyloidosis. Ka āta arotake tō tākuta mēnā he tika tēnei rongoā mō tō āhuatanga motuhake.

Kāore koe e tika kia whiwhi patisiran mēnā i pā koe i te tauhohenga pānga nui ki te rongoā, ki ētahi o ōna kai rānei i mua. Kei roto i tēnei ko ngā tauhohenga pēnei i te uaua ki te manawa, te pūhi nui, te hekenga kino rānei o te pēhanga toto.

Ko ngā tāngata e mate ana i ētahi āhuatanga hauora ka hiahia pea ki te aroturuki motuhake, kāore rānei pea e tika mō te rongoā patisiran. Me mōhio tō tākuta ki tō hītori hauora katoa i mua i te tīmatanga o te rongoā.

Ko ngā āhuatanga e hiahia ana ki te whakaaro nui ko:

• Ngā raruraru ngākau nui, ngā whakaeke ngākau tata rānei
• Ngā mate kaha, te pūnaha ārai mate rānei kua ngoikore
• Te mate ate i tua atu i te mea i pā mai i te hATTR
• Ngā mate rere toto, te whakamahi rānei i ngā whakaheke toto i tēnei wā
• Te hapū, ngā mahere rānei kia hapū
• Te whāngai ū

Mēnā kei te hapū koe, kei te whakamahere rānei koe kia hapū, kōrerohia tēnei ki tō tākuta tonu. Kāore i te mōhiotia katoa ngā pānga o te patisiran ki te hapū, nō reira me whakaaro nui.

Ngā Ingoa Waitohu Patisiran

Kei te wātea te Patisiran i raro i te ingoa waitohu Onpattro. Koinei anake te ingoa waitohu kua whakaaetia mō tēnei rongoā i te nuinga o ngā whenua, tae atu ki te United States me Europe.

I te wā e whiwhi ana koe i tō rongoā, ka tapaina te pounamu rongoā ko Onpattro, ā, koinei te ingoa ka kitea e koe i runga i ō rārangi hauora me ngā tuhinga inihua. Kāore anō he momo rongoā whānui o te patisiran e wātea ana.

Mēnā kei te haere koe, kei te whiwhi rānei koe i te manaakitanga i ngā whare rerekē, me whakahua tonu te ingoa whānui (patisiran) me te ingoa waitohu (Onpattro) kia mōhio ai te kōrero ki ō kaiwhakarato hauora.

Ngā Kōwhiringa kē mō te Patisiran

Ahakoa he tino whai hua te patisiran mō te hATTR amyloidosis, he ētahi atu kōwhiringa rongoā e wātea ana. Ka whakaaro pea tō tākuta ki ngā kōwhiringa kē i runga i ō tohumate motuhake, te haere whakamua o te mate, me ngā āhuatanga takitahi.

Ko te Inotersen tētahi atu rongoā i runga i te RNA e hoatu ana hei werohanga ia wiki i raro i te kiri. He rite te mahi ki te patisiran engari he rerekē te pūtake o ngā pānga taha me te hōtaka whakahaere.

Ko te Tafamidis he rongoā waha e āwhina ana ki te whakapūmau i ngā pūmua transthyretin, e ārai ana i a rātou kia kaua e kōpiko. He tino whai hua mō te hunga e pā ana te ngākau mai i te hATTR.

Ko ētahi atu rongoā tautoko pea ko:

• Ngā rongoā mō te mamae o te io me ngā tohumate
• Te rongoā tinana me te rongoā mahi
• Te tautoko kai me ngā tāpiringa
• Ngā rongoā ngākau mēnā kei te noho mai te pānga o te ngākau
• Te whakawhitinga ate i ngā keehi tino kaha

Ka mahi tō rōpū hauora ki a koe ki te whakatau i te huarahi rongoā pai rawa atu i runga i tō momo hATTR motuhake, te kaha o ngā tohumate, me te āhua o te hauora whānui.

He Pai Anei te Patisiran i te Inotersen?

He rongoā whai hua a Patisiran me Inotersen mō te hATTR amyloidosis, engari he rerekē ō rāua painga me ngā mea hei whakaaro. Ko te kōwhiringa "pai ake" ka whakawhirinaki ki ō āhuatanga me ō hiahia.

Ka tukuna a Patisiran ia toru wiki mā te whakauru IV i tētahi whare hauora. Ko te tikanga he iti ake ngā rā rongoā i te tau, engari me haere koe ki te whare haumanu mō ia horopeta. Kua whakaatu te rongoā i ngā hua pai rawa atu i ngā whakamātau haumanu me te whakaheke nui i te pūmautanga o te mate.

Ka tukuna a Inotersen hei werohanga ia wiki i raro i te kiri, ka taea e koe te ako ki te tuku i a koe i te kāinga. He pai ake tēnei, engari me nui ake te horopeta me te aroturuki toto i ngā wā katoa nā te pānga pea ki ngā pereti me te mahi tākihi.

Mō te whai huatanga, ka whakaheke nui ngā rongoā e rua i te hanga o te pūmua transthyretin kino. E ai ki ngā rangahau he tino whai hua rāua, ahakoa he iti noa ngā rangahau whakataurite tika.

Ka āwhina tō tākuta i a koe ki te whakatau i ngā mea pēnei i tō whakamarie ki ngā tikanga whakahaere rerekē, ngā whakaritenga haere, te wā mahi, me ngā mea mōrearea mō ngā pānga taha motuhake i te wā e kōwhiri ana i waenga i ēnei kōwhiringa.

Ngā Pātai Auau mō Patisiran

He Haumaru a Patisiran mō te hunga e raru ana i te ngākau?

Ka taea te whakamahi a Patisiran ki te hunga e pā ana te ngākau ki te hATTR amyloidosis, engari me tino aroturuki. He maha ngā tāngata e hATTR ana ka pōti i ngā raru ngākau hei wāhanga o tō rātou āhuatanga, nō reira he āwangawanga noa tēnei.

Ka mahi tahi tō kaimātai ngākau me te tohunga hATTR ki te aroturuki i tō mahi ngākau puta noa i te rongoā. Ka whakamahi rāua i ngā whakamātau pēnei i te echocardiograms me ngā tohu toto ki te whai i te āhua o tō ngākau e urupare ana ki te rongoā.

Ka kite ētahi tāngata i te whakapai ake i te mahi o tō rātou ngākau i muri i te tīmatanga o te patisiran, nā te mea ka taea e te whakaheke i ngā taumata pūmua kino te whakaiti i te kino o te ngākau. Heoi, tērā pea e kore e taea te whakahoki i te kino o te ngākau.

He aha taku mahi mēnā ka whiwhi au i te nui rawa o te Patisiran?

He iti noa te tūponotanga o te nui rawa o te patisiran na te mea ka whakaritea, ka hoatu te rongoā e ngā tākuta whai mātauranga i roto i te wāhi whakahaere. Ka tātai pū te inenga i runga i tō taumaha tinana, ā, ka whakahaerea mā te pōturi i roto i te 80 meneti.

Mēnā e māharahara ana koe mō tō inenga, e pā ana rānei ki ngā tohumate rerekē i muri i te whakaurunga, whakapā atu ki tō rōpū hauora tonu. Ka taea e rātou te arotake i tō āhuatanga, me te whakarato i te aroturuki tika, te rongoā rānei mēnā e hiahiatia ana.

Ka whai tikanga te whare hauora e whiwhi ana koe i te rongoā hei whakahaere i ngā hapa rongoā, i ngā tauhohenga kino rānei ka puta i te wā o tō whakaurunga.

He aha taku mahi mēnā ka ngaro au i te inenga o te Patisiran?

Mēnā ka ngaro koe i tō whakaurunga patisiran kua whakaritea, whakapā atu ki tō rōpū hauora i te wa e taea ai ki te whakarite anō. He mea nui kia mau tonu ngā wā whakahaere rongoā i te wā e taea ai kia mau tonu ai ō taumata pūmua transthyretin.

Ka taea e tō tākuta te whakatika i tō hōtaka rongoā kia uru ai te inenga i ngaro, engari ngana ki te hoki ki te ara me ō wā whakahaere e toru-wiki. Kaua e māharahara mēnā me ngaro koe i te inenga i ētahi wā i te mea he mate, he āhuatanga rānei.

Mēnā e ngaro ana koe i ngā inenga i ngā wā katoa nā te tautohetohe hōtaka, i ētahi atu take rānei, kōrerohia tēnei ki tō rōpū hauora. Ka taea e rātou te āwhina i a koe ki te kimi otinga, ki te whakaaro rānei ki ētahi atu whiringa rongoā.

Āhea ka taea e au te whakamutu i te tango Patisiran?

Ko te whakatau ki te whakamutu i te patisiran me mahi tonu i te kōrero tahi me tō tākuta e tohunga ana ki te hATTR amyloidosis. Ko te nuinga o te tangata me haere tonu te rongoā mō te wā roa kia mau tonu ai ngā painga, me te ārai i te haere whakamua o te mate.

Ka arotakehia e tō tākuta tō urupare ki te rongoā i ngā wā katoa mā ngā whakamātautau mahi io, ngā aromatawai kounga o te oranga, me te aroturuki i ō taumata pūmua transthyretin. Mā ēnei aromatawai e āwhina ana ki te whakatau mēnā he pai tonu te rongoā.

Ko ētahi take ka mutu pea tō patisiran ko ngā pānga taha kino e kore e pai ake mā te whakahaere, te kore o te painga i muri i te wā whakamātautau tika, mēnā rānei ka tino huri te āhua o tō hauora.

Mēnā ka mutu tō patisiran, ka hoki pea ō taumata pūmua transthyretin ki ngā taumata o mua i roto i ngā marama torutoru, ā, ka tīmata pea ō tohumate hATTR ki te piki anō.

Ka taea e au te haere i te wā e tango ana au i te Patisiran?

Āe, ka taea e koe te haere i te wā e whiwhi ana koe i te rongoā patisiran, engari me whakamahere. I te mea e hiahia ana koe ki ngā whakaurunga i ngā wiki e toru, me whakarite e koe tō hōtaka haereere i runga i ō rāhui rongoā.

Mēnā kei te whakamahere koe i te haereere roa, kōrerohia tēnei ki tō rōpū hauora i mua. Ka taea pea e rātou te āwhina i a koe ki te whakarite i te rongoā rangitahi i tētahi whare tata ki tō ūnga, ahakoa he uaua tēnei nā te āhua motuhake o te rongoā.

Mō ngā haerenga poto, ka taea pea e koe te whakatika i tō hōtaka rongoā kia uru ki ō mahere haereere. Me mau tonu ngā tuhinga mō tō āhua me te rongoā i te wā e haereere ana, ina koa ki te whiti i ngā rohe o te ao.

Kia mahara me whakamātao te patisiran me te whakahaere motuhake, nā reira e kore e taea e koe te kawe i a koe anō. Me whakarite ngā whakaritenga katoa mā ngā whare hauora whaimana.