Ka pāngia koe e te ngoikore o ō waewae i ētahi wā? Ka mamae tō puku, ka pōuri rānei ina tū koe? Ahakoa he āhua noa iho ēnei, ko te mea e huna ana i muri i tēnei he mate onge kāore anō kia rangona e te tini tāngata, ā, kua tukuna iho i roto i ngā whakatipuranga. I tēnei rā ka kōrero tātou mō tētahi o aua mate, ko te hATTR amyloidosis . Ahakoa he kaupapa uaua tēnei, kia māmā noa iho te mārama.
He aha te Amyloidosis hATTR?
Ki te whakarapopototanga, he mate onge te hATTR (Hereditary Transthyretin Amyloidosis) e tukuna iho ana i ia whakatipuranga ki ia whakatipuranga, ā, ka kino haere i roto i te wā. Ko te take he huringa o roto i ō tātou ira, e kiia nei ko te whakarerekētanga ira.
Whakaarohia ko ngā mea katoa o roto i tō tātou tinana e whakahaeretia ana e ngā ira. Kei roto i tō tātou ate tētahi ira e kīia nei ko te TTR . Ina puta he whakarerekētanga i roto i tēnei ira, ka huri te pūmua e kīia nei ko te 'transthyretin' e hangaia ana e ia ki tētahi āhua rerekē, hē hoki.
Ka huihui ēnei pūmua āhua rerekē, ka hanga he putunga e kiia nei ko te ' amyloid ' i roto i ngā io o tō tātou tinana me ngā momo okana. Pērā i te paru me te waikura e ārai ana i te paipa wai, ka kino hoki aua okana i ēnei putunga amyloid.
Ka puta te polyneuropathy i tēnei āhuatanga, arā, he kino ki ngā io e rere ana mai i te roro ki ētahi atu wāhanga o te tinana. Ahakoa he mate kino tēnei, mā te maimoatanga tika, ka taea te whakahaere i ngā tohu, ā, ka taea te haere tonu te oranga.
He aha ngā tohu o te mate hATTR?
Nā te mea he maha ngā okana o te tinana e pāngia ana e te mate hATTR, 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.
Tirohia te ripanga i raro nei mō ēnei tohu .
| Pūnaha/ōkana e pāngia ana | Ngā tohu pea |
|---|---|
| Pūnaha Io | Te ngenge, te mākūkū, te mamae, kātahi ka ngaro te rongo o ngā ringa me ngā waewae. Te mate Carpal Tunnel Syndrome. Te uaua ki te hikoi. |
| Te Manawa me te Tohanga o te Rere | Te pā o te manawa kāore i te ōrite, te nui o te manawa, te whakaeke ngakau. Te toto toto iti me te hemo i te wā e tū ana. |
| Pūnaha Nakunaku | Te korere me te kōroke e taupatupatu ana, kāore he take. Te kī tonu ahakoa i muri i te kai iti. Te hekenga o te taumaha. |
| Ngā whatukuhu me te pūnaha mimi | Te uaua ki te mimi. Te ngoikore o te mahi a te whatukuhu. |
| Ngā kanohi | Ngā kanohi maroke, te pikinga o te pēhanga kanohi (glaucoma), te tirohanga pōuri. |
Kia maumahara, he maha o ēnei tohu ka mōrearea ki te ora, inā koa ngā mate o te ngākau. Nō reira, ki te pāngia koe e tētahi o ēnei tohu, inā koa mēnā kua pāngia tētahi o tō whānau e tēnei mate, me toro atu ki te tākuta tonu.
Me pēhea te tātaritanga o te mate hATTR?
Nā te mea he onge tēnei mate, ā, he rite tonu ngā tohu ki ētahi atu mate, he uaua pea te tautuhi i te mate. Engari he iti noa ngā mea e arohia ana e te tākuta.
- Hītori hauora whānau : Pātai atu mēnā kua pāngia tētahi o tō whānau e ngā mate manawa, te matotoru o te uaua manawa, ētahi atu mate pūnaha io rānei.
- Te pātai mō ngā tohu: Te pātai mēnā kei a koe ngā tohu kua whakahuatia i runga ake nei.
- Whakamātautau Ira: Ka whakamātauria he tauira toto, he tauira pūtau kiri rānei hei tirotiro mēnā he whakarerekētanga ira kei roto i te ira TTR. Koinei te huarahi tino tika hei whakaū i te mate.
- Kohikohi kiko: Ka tangohia he iti o te ngako mai i raro i te kiri o te puku ki te ngira iti, ka tirohia i raro i te karu hiko hei tirotiro mēnā he putunga amyloid. Kaua e manukanuka, ehara tēnei i te pokanga nui, ā, ka taea te mahi tere.
- Ētahi atu whakamātautau:Tērā pea ka mahia ngā whakamātautau toto me te mimi, ngā whakamātautau mahi io, me ngā whakamātautau pēnei i te ECG me te Echo hei tirotiro i te mahi a te manawa.
He aha ngā maimoatanga mō te hATTR?
E rua ngā whāinga matua o te rongoā i te mate hATTR. Ko tētahi he whakahaere i ngā tohumate, ā, ko tētahi he whakaiti, he aukati rānei i te whakaputanga me te whakatakotoranga o te pūmua hapa i roto i te tinana.
Te maimoatanga mō ngā tohu
- Ka hoatu he rongoā mō ngā raruraru o te ngākau me te kohikohinga wai i roto i te tinana .
- Ka hoatu ngā rongoā mō ngā raruraru o te pūnaha nakunaku pērā i te korere me te kōroke.
- Ka whakamahia ngā rongoā hei whakahaere i te mamae o ngā io.
Te maimoatanga e aro ana ki te pūtake o te mate
Koinei ngā maimoatanga matua ka taea te whakarerekē i te ahunga whakamua o te mate.
- Ngā Rongoā Whakangū Ira: Ka mahi ēnei rongoā mā te aukati i te ira TTR i roto i te ate kei whakaputa i te pūmua hē. Ko 'Inotersen', 'Patisiran', 'Vutrisiran' ētahi o ēnei rongoā. Ko ētahi o ēnei e wātea ana hei werohanga ia wiki, ko ētahi ka hoatu mā te uaua ia 3 wiki.
- Ngā Rongoā Whakapūmau Ira: Ka mahi ēnei rongoā mā te aukati i te pūmua TTR kua he te takai kia kaua e piri tahi, kia hanga ai he putunga amyloid. Ko 'Tafamidis' me 'Diflunisal' ngā rongoā o tēnei akomanga.
- Te Whakatō Ate: Nā te mea kei roto i te ate te pūmua hapa e hangaia ana, ka taea e te whakatō ate te whakahaere i te horapa o te mate. Heoi, he pokanga nui tēnei. Ā, ka angitu anake i ngā wāhanga tōmua o te mate.
Te tīma hauora e āwhina ana i a koe
Nā te mea he maha ngā wāhanga o te tinana e pāngia ana e tēnei mate, me rapu āwhina a ngā tohunga maha.
| Tākuta tohunga | Te āwhina e whiwhi ana rātou |
|---|---|
| Tohunga roro | Hei whakahaere i te kino me te mamae o ngā io. |
| Tākuta ngakau | Hei aroturuki i ngā pānga ki te ngākau me te whakarato i te maimoatanga e tika ana. |
| Tohunga Nephrology | Hei tirotiro i te mahi a te whatukuhu, hei āwhina hoki ki te tiaki i a ia. |
| Kaitohutohu Ira | Whakamāramahia te pānga o tēnei mate ki a koe me tō whānau. |
| Kaiwhakaora Tinana | Hei whakarato i ngā mahi whakakori tinana hei whakamama i ngā uauatanga o te hikoi me ngā nekehanga tinana. |
Karere Tangohia ki te Kāinga
- He mate ira kino te hATTR ka kino haere i te roanga o te wā.
- Ki te pāngia koe e ngā tohu pēnei i te ngoikore o ō ringaringa me ō waewae, te mate manawa, te mamae rānei o te puku, inā koa mēnā kua pāngia tētahi o tō whānau e tēnei mate, kaua e whakahawea.
- Ko te wawe o te tautuhi i tēnei mate, ka pai ake ngā hua o te maimoatanga.
- He tino whai hua ngā rongoā me ngā maimoatanga inaianei hei whakahaere i tēnei mate. Nō reira, kāore he take e mataku ai.
- Mena he pātai āu mō tēnei mate, kaua e wehi ki te kōrero ki tō tākuta.
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