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.

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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.