He aha te AL Amyloidosis? Me kōrero tātou mō tēnei mate kino!

Kua rongo koe i tēnei mate e kiia nei ko te 'AL Amyloidosis'? Kāore pea, tika? He tino onge tēnei, arā, ehara i te mate e pā ki te katoa. Heoi, ki te puta, ka tino kino. He ngāwari noa iho, he huringa tēnei i roto i tētahi momo pūtau e kiia nei ko ngā 'pūtau Plasma' kei roto i tō tātou tinana, ā, ko ētahi o ngā pūmua i hangaia e rātou ka kore e taea te whakahaere, ka putu ki roto i ngā momo okana o tō tātou tinana, ka kino ai. He rite ki tētahi mīhini i mahi pai, ā, ka tīmata ohorere te hanga i ngā wāhanga hē. Me kōrero tātou mō tēnei me ētahi atu taipitopito , nā te mea he mea nui kia mōhio ki tēnei.

He aha rawa te 'AL Amyloidosis'?

Ko tēnei 'AL amyloidosis' tētahi momo o tētahi rōpū mate nui ake e kiia nei ko te 'Amyloidosis'. He mate onge te 'Amyloidosis' e puta ana ina he huringa, he 'whakarerekētanga' rānei, i roto i ngā 'pūtau plasma' i roto i tō tātou hinu wheua. Ka whakaputahia e ēnei pūtau plasma kua rerekē he momo pūmua rerekē. Ka rite ēnei pūmua ki ngā pōro miro kua rarangahia, ka piri tahi, ka putunga ki roto i ō tātou whekau me ngā kiko ora.

I roto i te mate amyloidosis AL, ko te momo pūmua ka pōrearea pēnei ko te pūmua mekameka mārama. Ko ēnei pūmua mekameka mārama he wāhanga o ngā paturopi e whakamahia ana e ō tātou tinana hei whawhai i te mate. Ka hangaia ēnei paturopi e ngā pūtau plasma kotahi i kōrerotia e au i mua ake nei.

I te nuinga o te wā, ka pā te mate AL amyloidosis ki te ngākau me/ranei ki ngā whatukuhu . Heoi, i ētahi wā ka pā ki te puku, ki ngā whekau, ki ngā io, me te kiri.

Ko te mea pai rawa atu, ki te kitea wawetia tēnei mate, ā, ka tere te rongoā , ka taea te whakahaere hei mate mau tonu. Heoi, ki te kore e rongoātia, ka taea e ia te arahi ki ngā āhuatanga kino e morearea ai te ora, tae atu ki te mate. Nō reira, ehara tēnei i te mea hei mea ngāwari.

He aha te tikanga o ngā reta e rua 'AL' i roto i tēnei ingoa?

He rerekē ngā momo amyloidosis. Ka tapaina ia momo i muri i te pūmua rerekē e puta ai te mate. I roto i te amyloidosis AL, ko te reta A e tohu ana i te amyloidosis, ā, ko te reta L e tohu ana i te pūmua e kiia nei ko te mekameka mārama e puta ai te mate. Ko ētahi atu momo amyloidosis rongonui ko te amyloidosis AA (nā te pūmua amyloid A toto) me te amyloidosis ATTR (nā te transthyretin).

He aha te pānga o te 'AL amyloidosis' ki tōku tinana?

He kupu ngāwari noa iho, ko te AL amyloidosis he mate o ngā pūtau plasma. Ko ngā pūtau plasma he wāhanga o tō tātou pūnaha ārai mate. Ko tā rātou mahi matua he hanga paturopi hei whawhai i ngā mate. Whakaarohia kei roto i ō tātou tinana, he mano tini ngā tārua o ngā pūtau plasma e hanga ana i ngā momo paturopi rerekē hei whawhai i ngā mate rerekē. Ka wehea te pūtau plasma kotahi, ā, ka hanga he maha atu ngā pūtau.

I roto i ngā mate e pā ana ki ngā 'pūtau plasma', ka wehea noatia he rōpū o ēnei 'pūtau plasma', ka puta he nui o te momo 'paturopi' kotahi.

I roto i te mate amyloidosis AL, ina hangaia ngā paturopi, ka hangaia ngā mekameka pūmua e rua e kiia nei ko ngā mekameka taumaha me ngā mekameka māmā. Ko te mea e tupu ana i konei ko te hanga e ngā pūtau plasma he nui rawa ngā pūmua mekameka māmā. Ka he te takai o ēnei mekameka māmā, ka piri tahi. Ka kiia ēnei pūmua piri ko ngā miro amyloid. Ka whakatakotoria ēnei miro ki roto i ō tātou whekau. Ko te wā tēnā ka tīmata te kino nui ki aua whekau, i ētahi wā ka mōrearea te ora.

Ko wai te mea tino tūpono ka pāngia e tēnei mate?

He mate tino onge te amyloidosis. E kiia ana ka pāngia e te 9 ki te 14 tāngata ia miriona i te United States, ā, i waenga i te 5 ki te 12 tāngata ia miriona i ētahi atu wāhi o te ao. He paku noa ake te amyloidosis AL i roto i ngā tāne i ngā wāhine. I te nuinga o te wā ka pāngia hoki te hunga neke atu i te 60 tau te pakeke. Ko te tau toharite mō te tātaritanga he tata ki te 64 tau.

He aha ngā tohu o te 'AL amyloidosis'?

Kāore e taea e te 'AL amyloidosis' te pā ki ngā okana o te tinana, mai i te mahunga ki ngā waewae, engari ki ngā peka hoki. He maha ngā wā, ka rite ngā tohu o tēnei mate ki ngā tohu o ētahi atu mate iti ake te kino. Waihoki, he tino puhoi te puta mai o ngā tohu. Nō reira, kāore pea koe e kite tonu i tētahi huringa i roto i tō tinana.

Ngā tohu e pā ana ki te upoko me te kaki:

• Ka pōuriuri koe, ka māuiui rānei tō mahunga ina ara ake koe?
• He pōrearea papura tōu huri noa i ō kanohi, i ō kamo rānei?
• He nui ake tō arero i te mea noa ?

Ngā tohu e pā ana ki ngā ringa me ngā waewae:

Tērā pea ka whai āhuatanga ēnei o ngā ringaringa:

• Kei te pāngia koe e te ngau, te wera, te werowero rānei i ō ringaringa? He tohu pea ēnei o te mate e kiia nei ko te "Peripheral Neuropathy".
• Kei te mākūkū, kei te ngenge rānei ōu matimati? He tohu pea ēnei nō te "Carpal Tunnel Syndrome".

Ko ngā tohu o ngā waewae me ngā waewae ka uru pea ki:

• Kua pupuhi ō waewae, ō waewae rānei ?
• Kei te ahua kore ora ō waewae ?

Hei tāpiritanga, ka kite pea koe he ngawari tō marutanga , he ngawari te toto , he papura rānei te kiri i ngā wāhi kei reira ngā kita.

Ngā tohu e tohu ana i ngā raruraru o te ngākau me te pūkahukahu:

Ka taea hoki e ngā tohu i raro nei te tohu o ētahi atu mate, engari kia tūpato:

• Te tere o te manawa : He āhua e pāorooro ana, e tere ana hoki te manawa.
• Te poto o te manawa (dyspnea): He ahua pēhanga i roto i te uma, me te mea kāore e taea te manawa hōhonu.
• Mamae o te uma : Mamae kei ngā wāhi katoa o te uma. Ka taea e tēnei mamae te koi, te puhoi, te haere noa mai rānei. Ka taea hoki e te mamae o te uma te tohu o te mate manawa, nō reira, ki te mamae tō uma e neke atu ana i te rima meneti, ā, kāore e memeha i te okiokinga, i te rongoā rānei, waea atu ki te 911 tonu, me kawe rānei koe e tetahi ki te hōhipera.
• Ngenge : Te ngenge rawa, te āhua kāore e taea e koe te mahi i ō mahi o ia rā, me te mea kāore he ora o tō tinana.

Ngā tohu e tohu ana i ngā raruraru o te puku, o te puku rānei:

Ka pāngia hoki ō tikanga kai e te AL amyloidosis. Tērā pea ka pāngia koe e ngā tohu pēnei i:

• Te kore hiahia kai : Ka rerekē te hiahia kai o te katoa i ia wā, i ia wā. Engari, ki te kore koe e hiahia kai mō ētahi rā, kāore he take, he tohu pea tēnei nō te raruraru puku e pā ana ki te AL amyloidosis.
• Te pupuhi, te nui rawa rānei o te hau : He tohu noa te pupuhi me te hau, engari he whakama i ētahi wā. Heoi, ki te mau tonu te hau, he tohu pea tēnei mō te raruraru puku e pā ana ki te AL amyloidosis.
• Te kōroke : Ko te kōroke he iti iho i te toru ngā nekehanga o te puku i te wiki. Mena he neke atu i te toru wiki tō kōroke, he raruraru tēnei me kōrero koe ki tō tākuta.
• Korere : He tūtae wai. Ki te mau tonu te korere, me kōrero anō hoki koe ki tō tākuta.

Ngā tohu e tohu ana i ngā raruraru o te whatukuhu, o te pūkahukahu rānei:

Tērā pea ka kite koe i tētahi panonitanga o te āhua o tō mimi, te auau rānei o tō mimi. Ko ēnei tohu pea ko:

• He nui ake ngā mirumiru e kitea ana e koe i roto i tō mimi i tō te tikanga?
• He iti iho rānei tō mimi i tō te tikanga, me ara ake rānei koe i te pō ki te mimi ?

He aha ngā take o te AL amyloidosis?

Kua kōrerohia tēnei e tātou i mua. Ko te 'AL amyloidosis' ka puta mai i ngā 'pūtau plasma' e hanga ana i ngā 'paturopi', arā, ngā pūmua e kiia nei ko ngā 'mekameka taumaha' me ngā 'mekameka māmā', ina nui rawa te hanga o aua pūmua 'mekameka māmā'. Ka hē te takai o ēnei 'mekameka māmā', ka piri tahi, ka hanga i ngā 'fibrils amyloid' ka whakatakotoria ki roto i ō tātou whekau. Koinei te wā ka tīmata ai ngā raruraru.

Me pēhea te tautuhi a ngā tākuta i te AL amyloidosis?

He maha ngā whakamātautau e whakamahia ana e ngā tākuta hei tātaritanga i te AL amyloidosis. Ko te whakamātautau nui ko te tango i tētahi tauira iti o te kiko, o te okana rānei e whakaarohia ana kua pāngia e te mate. Ka kiia tēnei he koiora. Ka taea te whakarōpū i ngā koiora penei:

• Ko te koiora wheua : Ko te tango i tētahi tauira iti o te hinu wheua ki roto i te wheua.
• Kohikohi whatukuhu : Ka tangohia pea ētahi wahi iti o te kiko whatukuhu.
• Kohikohi ngākau : Ka tangohia pea ētahi wahi iti o te uaua ngākau.
• Te koiora papa ngako : Ka tangohia he wahi iti o te kiko ngako mai i te puku. He whakamātautau ngāwari noa iho tēnei.

Ngā whakamātautau tāpiri

Tērā pea ka whakahaerehia e tō tākuta ētahi atu whakamātautau hei tirotiro i te pai o te mahi a ō whekau. Kei roto i ēnei ko:

• Ngā whakamātautau toto : Ka mahia ēnei hei tirotiro i te mahi a ō whatukuhu, ō ngākau, me tō ate, me te tirotiro hoki i te nui o ngā mekameka mārama i roto i ō toto.
• Whakamātautau mimi : He whakamātautau kohi mimi 24-hāora tēnei i te nuinga o te wā. Ka kohia e koe tō mimi ki te kāinga, ka kawea te tauira ki tō tākuta. Ka tirohia e tēnei whakamātautau mēnā kei te pāngia ō whatukuhu e te amyloidosis.
• Electrocardiogram (ECG): Ka ine te ECG i te ngohe hiko o te ngākau.
• Echocardiogram : I ētahi wā ka kiia he ultrasound o te ngākau, ka whakamahia ngā ngaru oro auau-tiketike hei ine i ngā nekehanga o te ngākau.
• MRI o te Ngākau (Whakaahua Āhua Matū o te Ngākau) : Ka taea e tēnei whakamātautau te tango pikitia mārama, taipitopito hoki o te ngākau.

Me pēhea te rongoā i te AL amyloidosis?

Ka rongoāhia e ngā tākuta te AL amyloidosis hei whakaiti i ō tohu, hei whakahaere i te kino o ngā okana, hei whakaroa, hei aukati rānei i te hanga o ngā pūmua amyloid rerekē.

Ka taea e ngā tākuta te rongoā i te AL amyloidosis mā te chemotherapy, te immunotherapy, te steroids rānei. Ka hoatu ki te nuinga o te tangata tētahi, e rua rānei ngā rongoā chemotherapy, he maha ngā wā ka honoa ki ngā steroids. Ka mahi tahi ēnei rongoā ki te whakangaro i ngā pūtau plasma e hanga ana i ngā pūmua mekameka māmā.

He mea nui, ahakoa ka taea e ēnei rongoā te aukati, te whakaroa rānei i te whanaketanga o te AL amyloidosis, kāore e taea te tango i ngā miro amyloid kua hanga kē i roto i ō whekau. Kia tīmata te maimoatanga, ka taea e tō ake pūnaha ārai mate te tango mārire i ēnei pūmua rerekē. Kei te rapu hoki ngā kairangahau i ngā paturopi monoclonal hou ka taea te tango i ēnei miro.

Ka kōrero anō tō tākuta ki a koe mō te whai huatanga pea o te "whakatō wheua" me te "whakatō pūtau take" rānei. Ahakoa he uaua ake ēnei maimoatanga, ka tino angitu pea mō ētahi tāngata.

Ka taea te ārai i te whanaketanga o te `AL amyloidosis`?

Kāore, kāore. Kāore he huarahi hei ārai i te AL amyloidosis, i tētahi atu momo amyloidosis rānei. Ka puta te AL amyloidosis ina rerekē te āhua o tētahi pūtau plasma, ā, ka tīmata te wehewehe me te kore e taea te whakahaere. Ehara tēnei i te mea ka taea e tātou te whakahaere.

Kia pēhea te roa ka taea e koe te ora me te `AL amyloidosis`?

Kei te āwhina ngā tākuta i te hunga e pāngia ana e te AL amyloidosis kia roa ake te ora. Ki ētahi, he mate roa, he mate mau tonu rānei te AL amyloidosis, ka taea te whakahaere mā te rongoā. Heoi, he mea nui kia mahara he mate tino kino tēnei, ā, ka arahi pea ki ngā mate hauora e morearea ana ki te ora.

Nā te mea he mate onge te AL amyloidosis, he uaua ki ngā tākuta te mōhio tika ki te roa o te oranga o te tangata whai mate nei. Mena he AL amyloidosis tōu, pātai atu ki tō tākuta mō tō āhua i muri i te maimoatanga. Ka taea e tō tākuta te hoatu ki a koe ngā mōhiotanga pai rawa atu mō ngā mea ka tumanakohia.

Me pēhea taku tiaki i ahau anō?

Mena kei a koe te AL amyloidosis, ka arotahi tō tākuta ki te rongoā i ō tohu me te aukati, te whakaroa rānei i te haere whakamua o te mate. Me haere tonu pea koe ki te tango rongoā, ā, tera pea he pānga taha o aua maimoatanga. Ko tētahi huarahi hei tiaki i a koe anō ko te ako mō ngā pānga taha o ō maimoatanga me pēhea te whakahaere i aua pānga. Anei ētahi atu whakaaro:

• Ka pā pea ētahi maimoatanga ki tō hiahia kai.Mena koinā, pātai atu ki tō tākuta mō ngā tikanga kai hauora hei āwhina i a koe kia kaha tonu i te wā e rongoatia ana. He mea tino nui te kai i tētahi kai taurite.
• Ngāna kia nui te okiokinga . He mea nui te okiokinga mō te tinana ina whawhai ana koe ki tēnei mate.
• He huarahi pai te whakakori tinana hei pupuri i te harikoa o tō hinengaro, hei āwhina hoki i a koe kia mau tonu te taumaha hauora. Heoi anō, pātai atu ki tō tākuta mō ngā tohutohu mō ngā whakakori tinana e kore e tino taumaha ki tō tinana.
• Nā te mea he mate onge te AL amyloidosis, tera pea ka noho mokemoke koe, ka noho motuhake hoki . Tērā pea kāore ētahi e mārama ki te mate. Pātai atu ki tō tākuta mō ngā rōpū tautoko, ngā kaupapa rānei mō te hunga whai AL amyloidosis. He puna kaha nui te kōrero ki aua tāngata.

Hei whakamutunga, ētahi kōrero nui (Karere hei tango ki te kāinga)

Ko te amyloidosis AL (Amyloid light chain, te amyloidosis tuatahi rānei) he mate onge e puta mai ana i te whakatakotoranga o ngā pūmua mekameka mārama rerekē ki roto i ngā whekau me ngā kiko o te tinana. He mate tino kino pea, i ētahi wā ka whakahaeretia hei mate mau tonu, engari ka taea hoki e ia te whakararu i te ora.

Kaua e manukanuka, kei te kimi huarahi hou ngā tākuta hei āwhina i te hunga whai AL amyloidosis kia roa ake te ora, kia pai ake hoki te oranga. Mena kei a koe te AL amyloidosis, pātai atu ki tō tākuta mō ngā whakamātautau haumanu hou me ngā rangahau hei rongoā i te mate. Ko te kitenga wawe me te maimoatanga he mea nui. He mea nui hoki kia noho pai, kia whai hoki i ngā tohutohu a tō tākuta.

` Amyloidosis AL, amyloidosis tuatahi, pūtau plasma, pūmua mekameka mārama, fibrils amyloid, mate tākihi, mate manawa