He uaua pea te kimi i tētahi tākuta e tika ana māu, e mārama ana hoki ki a koe i ētahi wā. He rerekē tātou katoa, he rerekē hoki ō tātou hiahia me ō tātou manakohanga. Nō reira, ki te mea he mate onge tōu pērā i te hATTR Amyloidosis , tera pea ka nui ake te uaua. I te wā e rongoā ana i tētahi mate pēnei, he mea nui kia kimihia he tākuta e mārama ana ki te mate, ā, māna e whakarato ki a koe te taumata tiaki e hiahiatia ana e koe. Inaa, kia whiwhi ai koe i te maimoatanga pai rawa atu, me kimi e koe ētahi tohunga i roto i ngā mara rerekē.
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He aha te momo tākuta e rongoā ana i te hATTR?
He kupu ngāwari noa iho, he mate onge te hATTR amyloidosis ka pā ki ngā whekau maha o tō tinana i te wā kotahi. Ko te tikanga o tēnei, kāore e taea e koe te whiwhi maimoatanga mai i te tohunga kotahi anake. Me tautoko koe e tētahi tīma maha-mātauranga.
Hei tauira, ki te pāngia tō ngākau e tēnei mate, me toro atu koe ki tētahi tākuta ngākau. I tētahi atu taha, ki te mea he raruraru pūnaha io tōu, pērā i te ngoikore, te ngoikore rānei o ō waewae, me toro atu koe ki tētahi tākuta pūnaha io. Nō reira, ko ngā tohu e pāngia ana e koe, ko ngā whekau e pāngia ana, me te nui o te kino i puta mai i te mate ka whakatau ko wai ngā tākuta me toro atu koe.
I te ripanga i raro nei, ka kite tātou ko ēhea ngā tohunga e tino hiahiatia ana mō te mate hATTR me ngā momo tohu e rongoāhia ana e rātou.
| Te mara hauora motuhake | Ngā tohu/ngā āhuatanga noa e rongoatia ana e rātou |
|---|---|
| Tākuta ngakau | Te ngoikore o te mahi a te ngakau (Cardiomyopathy), te koretake o te manawa o te ngakau, te uaua ki te manawa. |
| Tohunga roro | Te ngenge, te mākūkū, te mamae, me te ngaronga o te rongo i ngā peka me ngā waewae (Peripheral Neuropathy). |
| Tohunga kai | Mamae puku, korere, kōroke, ngaronga taumaha, whakapairuaki. |
| Tohunga Nephrology | Ina pāngia ngā whatukuhu (hei tauira, te pūmua i roto i te mimi). |
| Tākuta kanohi | Ina pāngia ngā kanohi (hei tauira, te pikinga o te pēhanga kanohi, te tirohanga pōuri). |
| Kaitohutohu Ira | I te mea he mate tuku iho tēnei, me whakamōhio ngā whānau ki ngā mōrearea me ngā whakamātautau ira. |
Tērā pea ka whakawhirinaki ō tohu ki te whakarerekētanga motuhake o te ira Transthyretin (TTR) e puta ai te mate. Mā tēnei ka whakatau ko tēhea momo tākuta e hiahiatia ana e koe. Me toro atu pea koe ki ētahi atu tohunga mēnā ka puta he tohu hou i te roanga o te wā i te haere whakamua o te mate.
Me pēhea te kimi i tētahi tohunga hATTR i Sri Lanka?
He mea tino nui te whiwhi tiaki motuhake i te wā e rongoatia ana tētahi mate onge pēnei. I Sri Lanka, ko te huarahi pai ki te mahi i tēnei ko te haere ki tētahi hōhipera nui kei reira ngā tohunga maha e mahi ana i te wāhi kotahi.
I te nuinga o te wā, i roto i ngā hōhipera kāwanatanga nunui pērā i ngā Hōhipera Whakaako me te Hōhipera ā-Motu o Sri Lanka, ka huihui ngā tohunga o ngā momo mara ki te rongoā i ngā tūroro. Tērā pea kei ētahi hōhipera tūmataiti nunui tēnei whare.
Ko tāu mahi tuatahi i tēnei haerenga ko te toro atu ki tō tākuta whānau (GP). Ka taea e ia te tuku i a koe ki te tohunga tino tika, ki te hōhipera rānei me tētahi rōpū tohunga, i runga i ō tohumate.
Ko te painga o te whiwhi maimoatanga i tētahi pokapū pēnei, ko ōu mate katoaMā te noho o ngā pūkete hauora ki te wāhi kotahi ka taea e ngā tākuta te kōrero mō tō āhua me te whakawhanake i te mahere maimoatanga pai rawa atu. Ka taea hoki e koe te ako mō ngā maimoatanga hou, ngā whakamātautau haumanu rānei.
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Check Availability →Me whai tonu taku tākuta whānau?
Āe, tino tika. Ahakoa kei a koe te hATTR, he mea nui rawa tō tākuta tiaki tuatahi. Ko ia te pokapū o tō hauora. He mea nui rawa kia pai te whakawhitiwhiti kōrero i waenga i tō rōpū tohunga me tō tākuta whānau . Kaua e wareware ki te whakamōhio atu ki tō tākuta whānau mō ngā mea katoa i kitea e koe, i rongoatia, i whakamatautauria, me ētahi atu. Hoatu hoki he kape o ō pūrongo tohunga ki tō tākuta whānau.
Me pēhea taku whakarite i taku maimoatanga me ngā tākuta maha?
Ahakoa te āhua nei he uaua tēnei, he tino māmā noa iho mēnā ka whakamaheretia i mua.
- Puritia tāu ake kōnae: Puritia ō pūrongo whakamātautau katoa, ō whakahaunga rongoā, me ngā tohutohu ki roto i te kōnae kotahi. Puritia he pukapuka whare hauora.
- Kia mōhio tonu koe ki ngā tohumate hou katoa: Kōrerotia ki ngā tākuta katoa e kite ana koe mō ngā tohumate hou ka puta mai i a koe, mēnā rānei ka kino haere tētahi tohumate tawhito.
- Pātai atu: Ki te mea kāore koe e mārama ki tētahi mea, kaua e wehi ki te pātai anō ki tō tākuta. He mea tino nui kia mārama koe ki tō mate me te maimoatanga.
Me pēhea taku whiriwhiri i te tākuta tika mōku?
Me whai hononga pai koe ki te tākuta e rongoā ana i a koe, nā te mea he haerenga roa tēnei.
He tika ki a koe te whiriwhiri i tētahi tākuta e whakarongo ana ki a koe, e whakaute ana i a koe, e mārama ana hoki ki tāu e kōrero nei.
Tērā pea ka pai ake koe ki tētahi tākuta he rite tō ira ki tō ira tangata. Tērā pea ka pai ake koe ki tētahi e whakamārama ana i ngā mea i roto i te huarahi e mārama ai koe. Mēnā kei te pāngia koe e tētahi mate tuku iho pēnei, he mea nui kia kite i tētahi tākuta hei ārahi i a koe mō te pānga ki ētahi atu mema o te whānau me ngā whakamātautau e hiahiatia ana e rātou.
Ki te kore koe e pai ki te tākuta tuatahi ka kite koe, kaua e manukanuka. Tērā atu anō ētahi tākuta pai e pai ana mōu, e mārama ana hoki ki ō hiahia. Rangahauhia, ā, kimihia te tākuta pai rawa atu māu.
Karere Tangohia ki te Kāinga
- He mate te amyloidosis hATTR e pā ana ki ngā whekau maha o te tinana, nō reira me tautoko koe e tētahi tīma tākuta he tohungatanga ki ngā momo mara.
- Ko te taahiraa tuatahi i roto i tō haerenga ko te toro atu ki tō tākuta whānau (GP). Māna koe e tuku ki ngā tohunga e tika ana.
- He mea nui kia mau tonu te whakawhitiwhiti kōrero pai i waenga i ngā tākuta katoa e rongoā ana i a koe. Puritia ō tuhinga hauora katoa kia tika.
- Whakapaua te wā ki te kimi i tētahi tākuta e whakarongo ana ki a koe, e whakaute ana i a koe, e whakamārama ana hoki i ngā mea ki a koe me te ngāwari. He mea nui anō hoki te rapu maimoatanga mai i tētahi tākuta e pai ana koe ki a ia, e whakawhirinaki ana hoki ki a ia, mō tō hauora hinengaro.
- Kia maumahara kāore koe i te mokemoke i tēnei haerenga. Mā te ārahi a te tīma hauora tika, ka taea e koe te ora angitu me tēnei mate.
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