Kei te wiriwiri noa ō ringaringa me ō waewae? Kei te kī tonu rānei koe ahakoa kua kai iti noa, kei te pāngia rānei koe e te mamae o te puku? I ētahi wā ka whakaaro tātou he mea noa ēnei, engari kei muri i ēnei he mate kino ake, engari he onge, kāore e kōrerotia ana. I tēnei rā ka kōrero tātou mō tētahi mate pēnei, e tukuna iho ana i tētahi whakatipuranga ki tētahi whakatipuranga , ā, ka kino haere. He mate e kiia nei ko te hATTR Amyloidosis.
He aha te hATTR Amyloidosis?
Ko te ingoa katoa o tēnei ko Hereditary Transthyretin Amyloidosis. Ka tapaina pototia ko hATTR . He mate onge tēnei e tukuna iho ana, arā, ka tukuna iho mā roto i ngā ira.
Whakaarohia, ka hangaia e te ate o tō tātou tinana tētahi pūmua motuhake e kiia nei ko te transthyretin (TTR) . I roto i te tangata hauora, ka mahi tēnei pūmua i tana mahi, kātahi ka ngaro. Heoi, i roto i te tangata whai mate hATTR, nā te whakarerekētanga ira i roto i tētahi ira, ka hangaia tēnei pūmua TTR i roto i te āhua hē. He rite ki tētahi taonga takaro ataahua e pakaru ana.
Ka huihui mai ēnei pūmua kua he te takai, ka hanga he puranga iti. Ka kiia ēnei puranga pūmua he amyloid . Ka tīmata ēnei amyloid ki te tāpui ki ngā wāhanga rerekē o tō tātou tinana, inā koa ki ngā whekau pēnei i ngā io, te ngākau, me ngā whatukuhu. Pērā i te paru e mau ana ki roto i te paipa wai, ka tīmata ēnei puranga pūmua ki te kino i aua whekau. Ka taea e tēnei te whakararuraru nui, ā, ka mate pea. Engari ko te rongo pai, kei reira ngā maimoatanga pai hei whakahaere i ēnei tohu.
Tērā pea ka tapa noa e tō tākuta ko "Amyloidosis," nā te mea ko te hATTR tētahi momo o tētahi rōpū mate e kiia ana koia.
He aha ngā tohu pea o te mate hATTR?
Nā te mea he maha ngā wāhanga o te tinana e pāngia ana e tēnei mate, he rerekē rawa ngā tohu. I ētahi wā he rite ēnei tohu ki ērā o ētahi atu mate noa, nō reira he uaua ki te tautuhi i te mate.
Ko te pūnaha io te nuinga o te wā ka pā ki tēnei mate. Ina nui haere ēnei pūmua i roto i ngā io e rere ana mai i te roro ki te toenga o te tinana, ka kiia tēnei mate ko te Polyneuropathy . Nō reira, ka pāngia pea koe e ēnei āhuatanga.
| Pūnaha e pāngia ana | Ngā tohu pea |
|---|---|
| Pūnaha Io |
|
| Ngākau | |
| Pūnaha Nakunaku | |
| Ētahi atu āhuatanga |
Ko te mea nui, ko te whakanui me te koretake o te manawa o te ngākau i puta mai i tēnei mate ka taea te whakararu i te ora. Nō reira, me tino tupato koe ki ēnei tohu.
Me pēhea te whanaketanga o tēnei mate? Ko wai kei te mōrearea?
E ai ki te ingoa, he mate tuku iho tēnei. Mēnā kei a koe tēnei mate, nā te mea i riro mai i a koe te ira hapa i tō whaea, i tō pāpā rānei (i a rāua rānei).
E kiia ana tēnei he mate tino onge o te ao. Heoi, i ētahi whenua, hei tauira, i Potukara, i Hapani, me Parahi, ka kitea whānuitia tēnei mate. Ahakoa he iti noa ngā raraunga motuhake mō tēnei i Sri Lanka, e whakaponohia ana he nui pea ngā tūroro kua hē te tātaritanga nā te mea he rite ngā tohu ki ētahi atu mate.
Ka puta ngā tohu i ngā tau katoa, i waenga i te 30 me te 70 tau te pakeke. He ōrite te pānga ki ngā tāne me ngā wāhine.
Me pēhea te tautuhi a te tākuta i tēnei mate?
He uaua pea te tautuhi i tēnei mate nā te mea he maha ngā tohu.
Te pātai mō te hītori whānau me ngā tohu
Tuatahi, ka pātai te tākuta ki a koe me tō whānau mō tō hītori hauora.
- He mate manawa, he matotoru rānei te manawa o tētahi o tō whānau?
- Kei te māuiui, kei te wera rānei ō waewae?
- Kei te mamae tō puku, kei te mate korere, kei te mate kōroke rānei?
- Ka pōuri koe ina tū koe?
- He raruraru tirohanga tōu?
Ngā whakamātautau motuhake
I runga i ō tohumate, ka tūtohu pea tō tākuta i ētahi atu whakamātautau.
- Ngā whakamātautau toto me te mimi: Ka āwhina ēnei ki te tirotiro i ngā taumata pūmua rerekē i roto i te tinana.
- Kohikohi kiko: Koinei te huarahi matua hei whakaū i te mate. I te nuinga o te wā, ka tangohia he wahi kiko iti mai i te papa ngako i raro i te kiri o tō puku i raro i te rongoā whakamoe, ka tukuna ki te taiwhanga. Ka taea te whakamahi hei tirotiro mēnā kua whakatakotoria te pūmua amyloid i kōrerohia e tātou.
- Whakamātautau Ira: Kia whakaūtia te aroaro o te amyloid i roto i te koiora, ka mahia he whakamātautau DNA hei whakatau mēnā he hATTR tuku iho, he momo amyloidosis rānei. He mea tino nui tēnei mō te whakamahere maimoatanga.
- Ētahi atu whakamātautau: Tērā pea ka mahia ngā whakamātautau ECG me te Echo hei tirotiro i te mahi a te ngākau, me ngā rangahau kawe io hei tirotiro i te mahi a te io.
Nā te mea he mate onge tēnei, kāore pea i te katoa ngā tākuta e mōhio nui ana ki tēnei mate. Nō reira, he mea tino nui kia rapu whakaaro tuarua mai i tētahi atu tohunga i muri i te whakaūnga o te mate.
He aha ngā maimoatanga mō tēnei mate?
Ko te maimoatanga mō te hATTR e whakawhirinaki ana ki ō tohu me te wāhanga o te mate. E rua ngā whāinga matua o te maimoatanga. Ko tētahi he whakahaere i ngā tohu. Ko tētahi he whakahaere i te whakaputanga o te pūmua TTR rerekē, koinei te pūtake o te mate.
1. Te rongoā mō ngā tohu
- Mena ka kohia te wai i roto i te tinana nā te mate o te ngākau, o te whatukuhu rānei, ka whakamahia ngā rongoā diuretic hei tango i taua wai tāpiri.
- Kei reira anō ngā rongoā mō ngā raruraru o te pūnaha nakunaku pērā i te mate korere me te mamae o te puku.
- He rongoā motuhake anō hoki hei whakahaere i te mamae o ngā io.
2. Ngā maimoatanga e aro ana ki te pūtake o te mate
Koinei ngā maimoatanga matua hei ārai i te kino haere o te mate.
| Tikanga maimoatanga | Whakaahuatanga |
|---|---|
| Ngā Rongoā Whakangū Ira | |
| Nga raau taero penei i te Inotersen, Patisiran, Vutrisiran | Ko te mahi a ēnei rongoā mā te kī atu ki te ira e whakaputa ana i te pūmua TTR i roto i te ate kia "weto". Ka whakaitihia te whakaputanga o te pūmua rerekē. Ka hoatu hei werohanga. |
| Ngā Whakapūmau Pūmua (Ngā Rongoā Whakapūmau Ira) | |
| Ngā rongoā pēnei i a Tafamidis, Diflunisal | Ka mahi ēnei rongoā mā te piri ki te pūmua TTR e hangaia ana, ā, ka ārai i tōna piriponotanga hē. Ka taea te tango i ēnei hei pire. |
| Te Whakatō Ate | |
| Pokanga | Nā te mea kei roto i te ate te pūmua hapa, ko tētahi maimoatanga ko te whakakapi i te ate ki tētahi mea hou. Engari he pokanga nui rawa atu tēnei, he pokanga mōrearea hoki. He mea tūtohutia tēnei mō ngā tūroro taitamariki i ngā wāhanga tōmua o te mate. |
Mā tō tākuta e whakatau ko tēhea maimoatanga te mea pai māu. Kōrerotia mā te mahorahora ki a ia mō ēnei kōwhiringa katoa.
Te tīma hauora e āwhina ana i a koe
Nā te mea he maha ngā whekau o te tinana e pāngia ana e tēnei mate, me tautoko koe e tētahi tīma tākuta me ngā momo tohungatanga rerekē.
- Tohunga io: Mō ngā raruraru e pā ana ki te io.
- Kaimātai ngākau: Hei aroturuki me te rongoā i te mahi a te ngākau.
- Tākuta Niho: Mena ka pāngia ngā whatukuhu.
- Tohunga puku: Mō ngā raruraru puku.
- Tākuta kanohi: Mō ngā raruraru kanohi.
- Kaitohutohu Ira: Hei whakarato māramatanga mō te mate me tōna pānga ki te ira tuku iho.
- Kaiwhakaora Tinana: Hei āwhina i ngā uauatanga o te hikoi, hei pupuri hoki i te tinana kia kaha.
Karere Tangohia ki te Kāinga
- He mate onge, he mate tuku iho te mate amyloidosis hATTR.
- Mena kei a koe ētahi āhuatanga pēnei i te ngoikore o ō ringaringa me ō waewae, te mamae tonu o te puku, ngā tohu o te ngākau kāore e taea te whakamārama, ā, ki te mea he hītori tō tētahi o tō whānau mō ēnei āhuatanga, kaua e whakahawea.
- Mā te tautuhi me te maimoatanga wawe ka āwhina i te ārai i te kino haere o te mate.
- Nā te mea he mate uaua tēnei, he mea tino nui kia rapu awhina mai i ngā tohunga rerekē.
- Mena kei a koe, kei tētahi atu rānei e mōhio ana koe, rapua tonutia he tohutohu mai i tētahi tākuta whai tohu . Kaua e wehi ki te kōrero mō tēnei.
💬 Comments (0)
Kaore ano kia tukuna he korero. Tāpirihia to korero ki konei mo te wa tuatahi.
Tāpirihia to korero