Kei te ahua koretake tō tinana? Me ako tātou mō tēnei (Autoimmune Autonomic Ganglionopathy - AAG)!

Ka pōuriuri koe i ētahi wā? Kei te ahua kē rānei kei roto i tō puku tetahi mea rerekē, kei te maroke tō waha, kāore rānei e taea e koe te whakahaere i tō manawa? Ahakoa te āhua noa o ēnei mea, i ētahi wā he kōrero uaua ake kei muri. Koinei tētahi o ngā mate onge, engari he mea tika kia mōhiotia, ka kōrerohia e tātou i tēnei rā.

He aha tēnei "Autoimmune Autonomic Ganglionopathy - AAG"? Me mārama noa iho, me pēhea?

Ki te kī ngāwari, ko te "Autoimmune Autonomic Ganglionopathy" ko te "(AAG)" rānei he āhuatanga e whakaeke hē ai te pūnaha parepare o tō tātou tinana, arā, te pūnaha ārai mate, i tō tātou ake pūnaha io autonomic. Whakaarohia, he rite tēnei ki te mea ka tupu mēnā ka whakaeke hē te ope taua e tika ana kia tiaki i tō tātou whenua i ō tātou ake wāhi nui.

He rite te pūnaha io ā-roto o tō tātou tinana ki tō tātou "pūnaha aunoa". Arā, e whakahaere ana i ngā mea maha e puta aunoa ana, me te kore e mōhiotia e tātou. Hei tauira:

• Tō manawa
• Te tere o te manawa (tere o te manawa)
• Te toto totoka
• Te werawera
• Te nakunaku

He maha o ēnei mea ehara i te mea e whakaarohia ana e tātou. Ka puta aunoa mai. Ko te pūnaha io ā-roto te mea e āwhina ana ki te pupuri i aua mahi aunoa kia pai te haere. I roto i te AAG, ka pakaru tēnei pūnaha nui. He āhuatanga tēnei e kiia nei ko te neuropathy ā-roto, ko te dysautonomia rānei.

He aha ai tō tātou tinana e pēnei ai? He aha ngā take?

Ina hoki, kāore anō kia taea e ngā tākuta te kī tika he aha te tino take o tēnei `(AAG)`. Engari kua kitea ētahi āhuatanga.

• I te nuinga o te wā, arā , i roto i te toru o roto i te rima o ngā tāngata e pāngia ana e te "AAG", ka puta tēnei āhuatanga i muri i te ora ake i tētahi atu mate, i muri rānei i tētahi mate pāwera. He rite ki tētahi pānga taha o taua mate.
• Ka pāngia pea ētahi tāngata e te mate e kiia nei ko te paraneoplastic AAG. Koinei te wā ka puta ai ētahi paturopi e hangaia ana e tō tātou pūnaha ārai mate hei whakautu ki tētahi mate pēnei i te mate pukupuku, ka whakaeke i te pūnaha io motuhake.

He aha te pānga o tēnei ki ō tātou tinana? Kia tirohia tata atu tātou.

He maha ngā tautau pūtau io kei roto i tō tātou pūnaha io ā-roto e kiia nei ko ngā ganglia ā-roto . He rite ēnei ki ngā hononga tereina. He maha ngā karere ka tukuna, ka riro mai hoki mā roto i ēnei. He mea nui tēnei whakawhitiwhiti karere kia taea ai te whakahaere i ngā mahi aunoa a tō tātou tinana, arā, ngā mahi kāore e taea e tātou te whakahaere (ngā whakaata).

I roto i te AAG, ka whakaekea e tō tātou pūnaha ārai mate ētahi kaiwhakawhiwhi motuhake i roto i ēnei ganglia. Ko ngā kaiwhakawhiwhi ngā wāhi e whiwhi ai ngā karere. Nō reira, ina pakaru ēnei kaiwhakawhiwhi, kāore aua karere io e haere tika, e puta tika rānei. Nō reira, ko ngā mea e puta aunoa ana, pērā i te whakahaere i te toto toto me te werawera, ka tīmata te hē.

Whakaarohia, mēnā ka wetekina te hononga i roto i te "papa whakawhiti matua" o tō whare, kāore ngā rama e kā, kāore te hau e hurihuri, me ētahi atu. Koinei te āhua o tēnei.

E pēhea te noa o te ingoa o tēnei mate ko te `(AAG)`?

He tino onge tēnei mate. Hei tauira, i te Hononga o Amerika, tata ki te 100 noa iho ngā tāngata e kitea ana tēnei mate i ia tau. Nō reira, he tino onge tēnei mate i Sri Lanka. Nō reira kaua e mataku ina rongo koe mō tēnei, ehara tēnei i te mea e pā ana ki te tini o te tangata.

He aha ngā tohu o te `(AAG)`? Me pēhea tātou e mōhio ai ki a rātou?

Ka rerekē pea ngā tohu o tēnei mate i ia tangata, i ia tangata. Kāore e rite ngā tohu o te katoa. Ko ngā tohu e tino kitea ana ko:

• Te kōroke: Ko te tikanga o tēnei he kōroke me te uaua ki te haere ki te wharepaku.
• Ngā ākonga whānui (ngā ākonga a Adie): I ētahi wā, kotahi noa te ākonga o te kanohi ka whānui, ā, ka pāngia pea e te mārama.
• Waha maroke, kanohi maroke rānei: He āhua me te mea kāore he huware, kāore hoki he roimata i roto i ngā kanohi.
• Te hemo o te ngākau / te koretake o te manawa: Tērā pea ka hemo ohorere koe, kāore he take e kitea ana.
• Te ngoikore o te roro (neurogenic orthostatic hypotension): He ahua pōuri me te māuiui ina tū ake i te tūnga noho, ina ara ake rānei i te moenga. Ka puta tēnei i te hekenga ohorere o te toto toto .
• Te uaua ki te mimi / Te pupuri mimi: Ko te āhua kāore e taea te mimi ahakoa e hiahia ana koe ki te mimi.

Tata ki te rua i roto i te toru o ngā tāngata whai AAG kua kitea he nui ngā taumata o ngā paturopi e kiia nei ko ngā paturopi ganglionic acetylcholine receptor (g-AChR antibodies) i roto i ō rātou toto. E whakapono ana ngā kairangahau he hononga kei waenganui i ngā taumata o ēnei paturopi g-AChR me te kaha o ngā tohu.

Me pēhea te tātaritanga a te tākuta i tēnei mate `(AAG)`?

Mena kei a koe ēnei tohu, ko te mea tuatahi ka mahia e te tākuta he pātai atu ki a koe mō ō tohu, me te tirotiro i a koe. Kātahi ka whakahaerehia pea e rātou ētahi whakamātautau motuhake hei tirotiro i te mahi a tō pūnaha io ā-roto.

Anei ētahi o rātou:

• Ngā whakamātautau pūnaha nakunaku: Hei tauira, he whakamātautau "Te whakawātea i te puku". Ka whakamātautauhia te tere o te wehenga atu o te kai i roto i tō puku.
• `Whakamātautau aro o te axon sudomotor tauanga (QSART):` Ka ine tēnei i te mahi a ō repe werawera.
• `Whakamātautau werawera whakatikatika`: Ka mahia tēnei whakamātautau hei tirotiro mēnā kua heke, kua piki rānei te werawera o te tinana, me te aha te take.
• 'Whakamātautau tēpu whakatītaha': I tēnei whakamātautau, ka takoto koe ki runga i tētahi moenga motuhake, ā, ka hurihia āta te moenga ki runga poutū, me te mātakitaki i te panonitanga o te tere o te manawa me te toto toto.
• Te tātaritanga mimi: Mā tēnei ka taea e koe te mōhio ki te pai o te mahi a tō pūkahukahu.

Hei tāpiritanga, ka taea te whakamātautau toto hei tirotiro i te taumata o ngā `(g-AChR antibodies)` kua whakahuatia ake nei . Mena he teitei te taumata o tēnei paturopi, he tohu anō tēnei he `(AAG)` pea. Heoi, he rerekē tēnei whakamātautau toto i te `whakamātautau paturopi AChR`, e whakamahia ana hei tirotiro i tētahi atu mate pūnaha io e kiia nei ko `(Myasthenia Gravis).`

He rongoā kei reira mō tēnei? He aha ngā mea ka taea te mahi?

Nā te mea he tino onge te AAG, kāore anō kia whakaritea he paerewa, "koinei te maimoatanga". I te nuinga o te wā , ko te arotahi ko te whakahaere i ngā tohumate.

Ka hangaia e ngā tākuta he mahere maimoatanga mā te whakakotahi i ngā momo tikanga maimoatanga. Ko ētahi o ēnei ko:

• Whakawhiti plasma / plasmapheresis: Ko te tango i ētahi o ō toto, te tango i ngā matū kino pēnei i ngā paturopi mai i te plasma, kātahi ka whakahokia te toto kua parakore ki tō tinana.
• Te rongoā immunoglobulin ā-uaua (IVIG): Ko te tikanga o tēnei ko te hoatu i te immunoglobulin ki tō tinana (he wāhanga o te plasma e whawhai ana ki te mate) i tangohia mai i ngā tāngata hauora. Ka āwhina tēnei ki te whakamarie i te pūnaha ārai mate.
• Ngā corticosteroids ā-uaua: Ka hoatu ngā horopeta nui o ngā steroids ārai-mumura, pērā i te methylprednisolone (Solu-Medrol®) hydrocortisone rānei (Solu-Cortef®), mā te werohanga.
• Ngā rongoā ārai mate: Ka mahi ēnei mā te whakaiti i te kaha rawa o te pūnaha ārai mate. Hei tauira, ko ngā rongoā pēnei i te rituximab (Rituxan®).

He ara hei ārai i tēnei āhuatanga `(AAG)`?

Kāore he huarahi tino whai hua hei ārai i tēnei, nā te mea he tino onge. Heoi, ko ētahi āhuatanga, pērā i te mate pukupuku, ka paku whakanui ake i tō tupono ki te pāngia e tēnei mate. Mena kua pāngia koe e te mate pukupuku, anei ētahi mea ka taea e koe te mahi hei tiaki i tō hauora whānui:

• Te whakakori tinana auau: inā koa te whakakori tinana ā-hauora.
• Mena kei a koe te `(Dysautomia)`, mā te kai i ngā kai he nui te tote me ngā wai ka āwhina i te whakahaere i tō toto toto. (He mea tēnei me kōrero koe ki tō tākuta.)
• Te whakahaere i te ahotea: Whakamahia ngā tikanga hauora pēnei i te whakakorikori tinana, te kōrero ki tētahi hoa, me te tuhituhi ki tētahi puka tuhi.
• Moe pai: Moe mō te 7-8 hāora i te rā.
• Te mau i ngā kākahu pēhi: Ka āwhina ēnei ki te whakapai ake i te rere o te toto me te whakaiti i te pupuhi (ina koa i ngā waewae).

Ka taea te whakaora katoa i tēnei āhuatanga `(AAG)`? He aha ngā mea ka tupu ā muri ake nei?

Me kī atu ahau, ahakoa kei te pouri ahau,Kāore e taea te rongoā i te AAG. Heoi, he tokomaha te hunga ka taea te whakahaere i ō rātou tohumate mō te wā roa. He mea whakamiharo, tata ki te kotahi i roto i te toru o te hunga whai AAG ka pai haere haere me te kore he maimoatanga. Heoi, ko te nuinga o te iwi ka pāngia e ētahi tohumate puta noa i ō rātou oranga.

He aha atu anō tāu e hiahia ana ki te pātai atu ki te tākuta?

Ki te whakapae koe kei a koe tētahi āhua pēnei, he mea nui kia kite koe i tētahi tākuta pai, kia pātai atu hoki mō ngā mea e whai ake nei:

• He aha te tino take o aku tohumate?
• He aha ngā whakamātautau me mahi e au kia tino mōhio ai ahau mēnā kei a au te `(AAG)`?
• He aha ngā kōwhiringa maimoatanga mō te `(AAG)`?
• He aha te tūponotanga ka memeha haere ngā tohu o te `(AAG)` ahakoa kāore he maimoatanga?
• He aha ngā huringa āhua noho me mahi e au hei whakapai ake i tōku hauora whānui?

He aha atu ngā āhuatanga ārai mate e pā ana ki te neuropathy autonomic?

He mea motuhake te ``(AAG)`` nā te mea, i tētahi taha, he mate e pā ana ki te pūnaha ārai mate, ā, i tētahi atu taha, he mate ārai mate o te pūnaha io.

Hei tāpiritanga, kei reira ētahi atu mate e pā ana ki te pūnaha ārai mate e whakanui ake ana i te mōrearea o te whakawhanake i te "dysautonomia" (ngā mate o te pūnaha io autonomic). Ko ētahi tauira ko:

• Mate celiac
• `(Guillain-Barré syndrome)` (Guillain-Barré syndrome)
• `(Lupus / systemic lupus erythematosus)` (Mate Lupus)
• `(Te mate rumatiki)` (Te mate rumatiki)
• `(Sjögren's syndrome)` (Sjögren's syndrome)

Nō reira, ka kite koe, he āhuatanga ēnei ka taea te hono tahi.

Hei whakamutunga, ngā mea hei maumahara (Karere hei tango ki te kāinga)

Āe, kua mōhio koe inaianei ko te `(Autoimmune Autonomic Ganglionopathy - AAG)` he mate onge e whakaekea ai e tō tātou ake pūnaha parepare tō tātou pūnaha io motuhake. Ko ngā tohu ka uru atu ki te ngaronga ohorere o te māramatanga, te hekenga o te `pēhanga` ina tū, me ngā raruraru puku.

Kaua e mataku ina rongo koe i tēnei. He tino onge tēnei. Waihoki, ka whakamahia ngā rongoā ārai mate me te 'plasmapheresis' hei rongoā mō tēnei. Ahakoa kāore e taea te whakaora katoa, ka taea e te nuinga o te tangata te whakahaere pai i ngā tohu me te noho i te oranga noa.

Ko te mea nui ko te toro atu ki tētahi tākuta whai tohu i te wā e taea ai mēnā kei a koe ēnei tohu. Mēnā ka mōhio wawe koe ki ēnei tohu, ka taea e koe te tīmata maimoatanga me te whakaiti i te pānga ki tō oranga. Kāore koe i te mokemoke, ā, kei reira ngā tākuta hei āwhina.

` Te Ganglionopathy Aneurysmal Ārai Mate Pūnaha Ārai Mate Pūnaha Ārai Mate, AAG, Pūnaha Io Ārai Mate Pūnaha Ārai Mate, Mate Pūnaha Io, Ngā Tohu, Te Maimoatanga