Mena he mate roa, he mate mau tonu rānei tōu, pērā i te mate ATTR amyloidosis tuku iho, me whai rōpū nui ngā tākuta me ngā tohunga hauora hei āwhina i a koe ki te whakahaere. He pono rawa tēnei mō te hunga whai mate hATTR amyloidosis. He mate ira tēnei. Ko te mea ka tupu, ka hangaia he pūmua rerekē e kiia nei ko te amyloid i roto i ngā whekau nui pērā i tō ngākau, ō whatukuhu, tō pūnaha io, me ō whekau. Nō reira, nā te mea he maha ngā wāhanga o tō tinana e pāngia ana e tēnei mate, ka uru atu ki tō rōpū hauora hATTR ētahi tohunga.
Ko wai kei roto i tāu tīma hauora mō te mate amyloidosis hATTR?
Kia titiro tātou ki ngā tohunga hauora matua hei āwhina i a koe ki tō hauora. Mā rātou koe e āwhina tahi ki te whakahaere i tō āhua.
Tohunga roro
I roto i te hATTR, he mea tino noa te mate e kiia nei ko te peripheral neuropathy . He kupu ngāwari noa iho, he kino tēnei ki ngā io o ō ringaringa, o ō waewae, me ō waewae o raro. Tērā pea ka pāngia koe e ēnei tohu:
I te haere whakamua o te mate, ka pakari, ka ngoikore pea ō uaua, ka uaua ai te hikoi me te mahi i tetahi mea e hiahia ana ki ngā pūkenga nekeneke pai.
Ka whakahaerehia e te tākuta roro ngā whakamātautau, pērā i te whakamātautau kawe io, hei aroturuki tata i te mahi a tō io ā-taha. Mā tēnei ka āwhina ki te whakatau mēnā he mate io tōu, me tōna kaha.
He maha ngā maimoatanga kua whakaaetia mō te hATTR ka taea hoki te āwhina i te rongoā i tō mate pūnaha io. Tērā pea ka tohua e tō tākuta ētahi atu rongoā hei āwhina i te mamae o te io.
| Kāwai rongoā | Ngā tauira o ngā raau taero |
|---|---|
| Ngā maimoatanga kua whakaaetia mō te hATTR | Eplontersen (Wainua), Inotersen (Tegsedi), Patisiran (Onpattro), Vutrisiran (Amvuttra) |
| Ngā rongoā mō te mamae o te io | Amitriptyline, Duloxetine (Cymbalta), Gabapentin (Neurontin), Pregabalin (Lyrica) |
Tākuta ngakau
E rongoā ana tēnei tākuta i ngā mate o te ngākau me ngā oko toto. He nui ake te mōrearea o te hunga whai hATTR ki te mate ngākau. Nā te mea ka taea e ngā putunga amyloid te hanga i roto i te ngākau. Ka taea e tēnei te arahi ki ngā āhuatanga e whai ake nei:
Ko te mea nui ko te mōhio ki ēnei tohu, me te rapu tohutohu hauora i te wā e taea ai mēnā e tika ana.
| Ngā pānga pea ki te ngākau | He whakamārama māmā |
|---|---|
| Te ngoikore o te ngākau | Ka ngoikore te ngākau, ka kohia te wai ki roto i ngā pukahukahu me ētahi atu kiko. |
| Te Cardiomyopathy Hypertrophic | Te matotoru o te uaua o te ngākau. |
| Mate Manawa Koronari | Te aukati i ngā oko toto e tuku toto ana ki te ngākau. |
| Te āwhatiwhati | Te pāorooro o te ngakau kāore i te ōrite. |
| Te ngoikore o te ngākau | Pōuriuri, ngoikore rānei. |
Mena ka tāpaetia koe kei te pāngia e te hATTR, ka whakahaerehia e tō tākuta ngakau ētahi whakamātautau hei tirotiro i te pai o te mahi a tō ngākau. Kei roto pea i ēnei ko te echocardiogram , te matawai MRI , te whakamātautau hikoi 6-meneti, me ngā whakamātautau toto. Mena he ngoikore tō ngākau, ka hoatu he rongoā ki a koe hei whakahaere i te mate, pērā i ngā rongoā diuretic, te here tote me te wai, me te pea he pacemaker .
Tākuta kanohi
Mena kei a koe te hATTR, he mea nui kia toro atu koe ki tētahi tohunga kanohi i ia wā. Tata ki te 20% o ngā whakarerekētanga ira e hua ai te hATTR ka pā ki ngā kanohi. Ka puta pea ngā tohu pēnei i:
- Ngā ira pango e mānu ana i mua i ngā kanohi (te kitenga i ngā ira pango e mānu ana i mua i ngā kanohi)
- Ngā kanohi maroke
- Glaucoma, te pikinga rānei o te pēhanga kanohi
- Te mātotoru o te karaihe (te kohu o te wai mārama e whakakī ana i te karu o te kanohi)
- Ngā huringa tirohanga kē atu
Mena e tika ana, ka whakahaerehia pea e tō tākuta kanohi he pokanga e kiia nei ko te trabeculectomy hei rongoā i te glaucoma. Ka whakahaerehia pea hoki e ia he pokanga e kiia nei ko te vitrectomy hei tango i te gel mai i te kanohi.
Kaitohutohu Ira
Ki te whakapae tō tākuta kei a koe te hATTR, ka tukuna koe e ia ki tētahi kaitohutohu ira . Ka taea e rātou te whakamātautau mō te whakarerekētanga ira e puta ai te mate. Waihoki, ki te mea kua kitea he hATTR i roto i tētahi o tō whānau tata (mātua, teina, tuākana rānei), me whakamātau koe. Nā te mea he 50% te tūponotanga o te whānau tata ki te tuku iho i tēnei whakarerekētanga ira. Ka whakamāramahia e te kaitohutohu ira ēnei whakamātautau ki a koe, ā, ka kōrerohia ki a koe ina puta ngā hua.
Ētahi atu mema nui o tō rōpū hauora
Haunga ngā tohunga kua whakahuatia i runga ake nei, he maha atu anō ngā tohunga e whai wāhi nui ana ki tō oranga tinana.
| Ngaio | Me pēhea rātou e āwhina ai i a koe? |
|---|---|
| Tohunga Nephrology | Tata ki te hautoru o te hunga whai hATTR ka pāngia e ngā putunga amyloid i roto i ō rātou whatukuhu. Kāore pea koe e hiahia ki te toro atu ki tēnei tohunga kia puta rā anō ngā tohu o te mate whatukuhu. Ka tirohia e tō tākuta tiaki tuatahi te mahi a tō whatukuhu mā te whakamātautau toto ā-tau (pēnei i te serum creatinine ). Mena he rerekē ēnei whakamātautau, ka tukuna koe ki tētahi tohunga whatukuhu. |
| Tohunga Orthopedic | He nui ake te mōrearea o ngā tūroro whai hATTR ki te whakawhanake i te mate carpal tunnel . Tērā pea nā ngā putunga amyloid i roto i ngā ringaringa tēnei. Tērā pea ka tūtohutia kia whakamahia ngā whitiki ringa me ngā mahi whakakori tinana i a rātou e moe ana. Mēnā he nui rawa ngā mate, me mahi pokanga pea. |
| Kaiwhakaora Tinana/Mahi | Ka taea e te hATTR te whakauaua i te hikoi me te mahi i ngā mahi o ia rā. Ka taea e ngā kaiwhakaora tinana me ngā kaiwhakaora mahi te āwhina i a koe ki te whakangawari ake i ēnei mahi. Kua whakaatuhia e ngā rangahau ko te whakakotahi i ēnei whakaora me ētahi atu maimoatanga, pērā i ngā rongoā, ka puta he hua pai. |
| Kaiwhakarato Manaaki Tuatahi | Ahakoa he maha ngā tohunga e toro atu ana koe, he mea nui tonu tō tākuta whānau, tō tākuta tiaki tuatahi rānei, ki tō rōpū. Ka taea e ia te tirotiro hauora ā-tau, te rongoā i a koe ina mate koe, ā, ka noho hei "kaiārahi" mō tō rōpū tiaki hauora, me te kōrero ki ngā tākuta katoa. |
He maha ngā wā, ka taea e koe te whiwhi i ngā ratonga katoa e hiahiatia ana e koe i tētahi pokapū hauora, i tētahi hōhipera nui rānei e tohunga ana ki te rongoā i te mate amyloidosis hATTR. Mā tēnei ka māmā ake te mahi tahi a ō tākuta katoa hei rōpū. Kōrero ki tō tākuta tiaki tuatahi mō te whakarite i tō maimoatanga.
Karere Tangohia ki te Kāinga
- He mate uaua te amyloidosis hATTR e pā ana ki ngā whekau maha o te tinana, nō reira me whakamahi he tīma tākuta me ngā pūkenga rerekē hei rongoā.
- Tērā pea kei roto i tō tīma hauora ngā tohunga i ngā mara pēnei i te neurology, te cardiology, te ophthalmology, me te nephrology.
- Ko tō tākuta tiaki tuatahi (tākuta whānau) te hononga matua e whakarite ana i tēnei tīma katoa.
- Kōrerohia mā te mahorahora ki tō tīma hauora mō tō āhua, te maimoatanga, me ō āwangawanga katoa. Kaua e wehi ki te pātai. He mema kaha koe nō tō tīma hauora.
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