He maha ngā wā ka pāngia tō tamaiti e te kirika, kāore he take? Me ako tātou mō ēnei SAID (Systemic Autoinflammatory Diseases)!

Ka pāngia tō tamaiti e te kirika i ētahi wā, engari kāore he makariri, he mate kē atu rānei? Ka puta te kirika, ka heke i roto i ētahi rā, kātahi ka puta anō i muri i ētahi rā? Ka pāngia ētahi mātua e ēnei momo wheako. Nō reira, i tēnei rā ka kōrero tātou mō tētahi take e kitea pinepine ana, e uaua ana hoki ki te kimi i te kirika. Ka kiia tēnei ko ngā SAID (Systemic Autoinflammatory Diseases) . I mua, i kiia tēnei ko ngā (Periodic Fever Syndromes) ko ngā (Recurrent Fever Syndromes) rānei.

He aha ēnei SAID? Kia mārama tātou!

He whakarāpopototanga noa iho, ko ngā SAID he rōpū mate e puta mai ana i te hapa, i te raruraru rānei o te pūnaha ārai mate o te tinana . I tēnei wā, me te kore he mate urutā o waho (pēnei i te huaketo, i te huakita rānei), ka puta noa te mumura i roto i tō tātou tinana. Me te mea nei kei te kaha rawa te pūnaha ārai mate o tō tātou tinana.

Whakaarohia, he rōpū hōia kei roto i ō tātou tinana (ko te pūnaha ārai mate tēnā). Ko tā rātou mahi he whawhai ki ngā iroriki e puta ai te mate ina uru mai. Engari i roto i te tinana o te tangata whai SAID, ka oho noa iho ēnei hōia i ētahi wā, ā, ka puta he raruraru i roto i te tinana.

Tērā pea kei te whakaaro koe mēnā he rite tēnei ki te (ngā mate pūnaha ārai mate) (arā, ngā mate pūnaha ārai mate). Hei tauira, he rite tonu te (rheumatoid arthritis) me te (lupus). Kāo, he rerekē paku ēnei e rua. I roto i ngā mate pūnaha ārai mate, ko te mea ka tupu ko te pūnaha ārai mate kua riro mai, kua urutau rānei o tō tātou tinana ki te whakaeke hē i ōna ake pūtau hauora. Engari i roto i ngā SAID, ko te raruraru kei roto i te pūnaha ārai mate ā-roto.

He tino onge ake ngā SAID i ngā mate pūnaha ārai mate. Ko te nuinga o ēnei he tuku iho , arā, he take ira whakarerekētanga, i te rerekētanga rānei.

Ko te tikanga ka tīmata ngā SAID i te wā pēpi, i te wā tamarikitanga rānei . Engari ehara i te mea koinei tonu te āhua. Tērā pea ka pāngia tō tamaiti e te kirika me ētahi atu tohumate. Tērā pea kāore he tohumate o tō tamaiti i waenga i ngā whakaekenga. Kāore he rongoā mō ngā SAID. Heoi anō, he maimoatanga kei reira hei āwhina i te whakahaere i ngā tohumate i te nuinga o te wā.

He aha ngā momo matua o ngā SAID?

Kua kitea e ngā kairangahau e 60 ngā momo SAID, ā, kei te kitea atu anō ētahi atu. Me titiro tātou ki ētahi o ngā momo e tino kitea ana.

• Te Kirika Whānau o te Moana-nui-a-Kiwa (FMF): Koinei te mate kirika tuku iho, e tino kitea ana i roto i ngā ira. Ka taea e ia te whakararu i te puku, te uma, me ngā hononga o te tamaiti .
• Te kirika ā-wā, te aphthous-stomatitis, te pharyngitis, te adenitis (PFAPA): Ka tīmata tēnei i ngā tamariki nohinohi i mua i te 4 tau te pakeke. Tērā pea ka memeha haere tēnei āhuatanga i muri i te 10 tau te pakeke.
• Te mate pūmau e pā ana ki te pūtau mate pukupuku (TRAPS): Ka pā tēnei ki te tamarikitanga, te taiohitanga, ā, i ētahi wā tae noa ki te pakeketanga.
• Te ngoikore o te Mevalonate kinase (MKD): I mua ko te hyper-IgD syndrome te ingoa, ka tīmata tēnei i roto i ngā pēpi kei raro iho i te 1 tau te pakeke.
• Ngā mate mumura-aunoa e pā ana ki te NLRP3: I mua ko te ingoa o tēnei ko ngā mate pūmau e pā ana ki te cryopyrin (CAPS). E toru atu ngā momo momo kei roto i tēnei.
• Te mate a Still e tīmata ana i te pakeke (AOSD): He momo mate rumatiki koretake o te taiohi (JIA) tēnei e tīmata ana i te pakeke.
• Te mate granulomatous e pā ana ki te NOD-2 (Blau syndrome): Ka tīmata tēnei i mua i te 4 tau te pakeke. Ko te kiri, ngā kanohi, me ngā hononga o te tamaiti te nuinga e pāngia ana.

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He aha ngā tohu o ngā SAID? Me pēhea tātou e mōhio ai ki a rātou?

Ko ngā tohu o ngā SAID ka tīmata i te tamarikitanga. Ko te tohu tino kitea, ā, ko te kirika auau, ko te kirika wā poto rānei . I te nuinga o te wā ka noho kore tohu te tangata i waenga i ngā whakaekenga. Heoi anō, tera pea ētahi atu tohu e motuhake ana ki ia momo SAID.

Kia tirohia ngā tohu motuhake o ētahi momo SAID i kōrerotia i runga ake nei:

• FMF: Ka pāngia te puku, te uma, me ngā hononga o te tamaiti e tēnei mamae nui, me te mumura hoki . I ētahi wā, ka puta he ponana ki ngā waewae o raro, ki ngā pona rānei. Whakaarohia, ka pāngia te tamaiti e te mamae puku me te kirika. Ina āwangawanga ngā mātua, ka haria rātou ki te hōhipera, tera pea ka whakaaro rātou he apendicitis. Engari ka memeha haere, ka hoki mai anō i muri i ētahi rā.
• PFAPA: Ka puta pea ngā tohu pēnei i te mamae o te korokoro, ngā mate waha, me te pupuhi o ngā kōpū lymph i te kaki .
• NGĀ MAHANGA: Ka pā mai te makariri, te mamae o ngā uaua i te uma me ngā ringa , me te whero pōrearea e tīmata ana i ngā ringa me ngā waewae, ka horapa puta noa i te tinana.
• MKD: I roto anō hoki i tēneiTērā pea ka pāngia koe e te makariri, te ānini, te mamae o te puku, te kore hiahia kai, me ngā tohumate rite ki te rewharewha.
• Ngā mate NLRP3: Ka puta pea ngā tohu pēnei i te ponana kiri, te ānini, te ngoikore, te mamae o ngā hononga, me ngā kanohi whero (conjunctivitis) .
• AOSD: He āhuatanga tēnei e puta ai ngā ponana kiri, ngā mamae hononga, me te mamae uaua . Tērā pea ka pāngia ētahi tāngata e te mamae o te korokoro, te mamae o te puku, te ngenge nui, me te mamae o te tinana.
• Te mate Blau: Ka pā mai pea he whara kiri ki ngā ringa, ki ngā waewae, ki te tinana rānei o tō pēpi . Ka pā mai hoki he mamae hononga me te mamae kanohi .

He aha i puta ai ēnei SAID? He aha ngā take?

Ko te nuinga o ngā SAID he mate ira . Arā, ko ia mate ka puta mai i tētahi rerekētanga (taurangi) i roto i tētahi ira motuhake.

Me titiro tātou ki ngā ira e awe ana i ētahi momo nui o te SAID:

• FMF: Nā te ira e kīia nei ko te (ira MEFV) tēnei i hua ai. Mā tēnei ira ka tohutohu i te hanga i te pūmua e kīia nei ko te (pyrin).
• PFAPA: Kāore anō kia kitea te take tuturu mō tēnei .
• NGĀ MAHERE: Nā te ira e kīia nei ko te (ira TNFRSF1A) tēnei i hua ai. Koinei te mea e hoatu ana i ngā tohutohu mō te hanga i tētahi pūmua e kīia nei ko te (tumor necrosis factor receptor - TNFR).
• MKD: Ko te take mō tēnei he ira e kiia nei ko te (ira MVK). Mā tēnei ka ārahi i te whakaputanga o te pūmua e kiia nei ko te (mevalonic kinase).
• Ngā mate NLRP3: Nā te ira e kīia nei ko te (ira NLRP3) tēnei i hua ai. Ka hoatu he tohutohu ki te hanga i tētahi pūmua e kīia nei ko te (cryopyrin).
• AOSD: Kāore anō kia kitea te take tuturu mō tēnei .
• Te mate Blau: Nā te ira e kīia nei ko te (NOD2 gene) tēnei i hua ai. Mā tēnei ka puta he pūmua e kīia nei ko te (NOD2).

Ka taea e ēnei SAID te whakaputa i ētahi atu raruraru?

Āe, ka pā mai pea he raruraru ki tēnei mēnā kāore e rongoatia tika . Mēnā ka haere tonu te mumura i roto i te tinana, ka arahi pea ki tētahi āhuatanga e kiia nei ko te "amyloidosis." Arā, ka whakatakotoria he momo pūmua ki roto i ō tātou whatukuhu. Ka pā mai pea he kino tuturu ki ngā whatukuhu . Koia te mea nui kia wawe te tautuhi i te mate me te whiwhi maimoatanga.

Me pēhea te tautuhi a te tākuta i tēnei mate SAID?

Ina hoki, he uaua te tautuhi i ēnei mate mumura-ā-tinana, nā te mea ka taea e ō rātou tohu te whakataurite i ētahi atu mate kino pēnei i te lupus, i ngā mate pukupuku rānei pēnei i te lymphoma. Nō reira, he mea nui kia kite i tētahi tākuta he tohunga mate mumura, he tohunga rheumatology, kia tika ai te tautuhi me te whakahaere i te mate o tāu tamaiti.

Ka whakamahia e te tākuta rumatiki o tāu tamaiti ētahi āhuatanga hei tātaritanga i ngā SAID. Ka pātai atu ia ki a koe mō ngā tohu o tāu tamaiti, me te mea kei roto i tō whānau ēnei āhuatanga (hītori whānau koiora). Tērā pea ka whakapae te tākuta kei te pāngia tāu tamaiti e te mate kirika ā-wā mēnā:

• Mena he maha tonu te kirika o te tamaiti .
• Mena he hītori o te kirika auau pēnei i tētahi o te whānau .
• Mena kei roto te tamaiti i tētahi rōpū tāngata e pāngia ana e te kirika auau pēnei .

He aha ngā whakamātautau e mahia ana mō tēnei?

Hei whakaū i te mate, ka tūtohu pea te tākuta rumatika o tāu tamaiti i ētahi whakamātautau. Kei roto i ēnei ko:

• Ngā whakamātautau taiwhanga: Ka taea te whakamahi i ngā whakamātautau pēnei i te "C-reactive protein (CRP)" me te "complete blood count (CBC)" hei tirotiro i te mumura i roto i te tinana. Ka pai ēnei whakamātautau i te wā e "whakaekea" ana te kirika, ā, ka hoki anō ki te āhua noa ina mutu te "whakaekenga".
• Whakamātautau mimi: Ka taea te whakahaere i tētahi whakamātautau pūmua mimi hei tirotiro mō te nui rawa o te pūmua i roto i te mimi. I roto i te MKD, ka taea e tētahi whakamātautau mimi e titiro ana ki ngā waikawa waro (ngā waikawa kei roto he ngota waro kotahi) te whakaatu i ngā taumata tiketike o te waikawa mevalonic.
• Whakamātautau ira: Ka taea e tēnei te tirotiro mō ngā momo ira. Heoi, ko ētahi tamariki he SAID kāore pea i kitea ngā momo ira, ā, ka hua ake pea he hua kino.

He aha ngā maimoatanga mō ēnei SAID?

He rerekē te maimoatanga mō ngā SAID i runga i te momo me te kaha o te mate . Kāore he rongoā mō ēnei mate. Heoi , ko ngā tohumate o tāu tamaiti ka taea te whakahaere mā te rongoā . Mena he torutoru noa ngā whakaekenga o tāu tamaiti i te tau, ka taea pea e koe te hoatu ki a ia he rongoā whakamamae pēnei i ngā rongoā anti-inflammatory kore-steroidal (NSAID) hei āwhina i te whakaiti i ōna tohumate. Heoi, ki te kaha ake te mate, ka tūtohu pea tō tākuta i ētahi atu kōwhiringa maimoatanga.

Anei ētahi o rātou:

• FMF: Ka taea te whakamahi i tētahi rongoā e kīia nei ko te (colchicine) hei whakahaere i tēnei. Ka whakaitihia te mumura. Mena kāore e taea e te tamaiti te tango i te colchicine, ka taea te whakamātau i tētahi momo rongoā (biologic) e kīia nei ko te (canakinumab).
• PFAPA: Ka taea te hoatu i ngā steroids (te nuinga o te wā ko te prednisone) hei whakapoto i te roa o te "whakaekenga" a te PFAPA. I roto i ētahi tamariki, ka taea hoki e te cimetidine, he rongoā e whakamahia ana hei rongoā i ngā mate puku, te āwhina i te whakahaere i ngā tohu.
• NGĀ MAHANGA: He maha ngā wā ka whai hua te rongoā e kiia nei ko te "canakinumab" mō tēnei. Waihoki, ka taea te whakaora i ngā tohu mā te whakamahi i ngā rongoā ārai-mumura i tohua e te tākuta, pērā i te "glucocorticoids".
• MKD:He rongoā whai hua anō hoki a Canakinumab mō te MKD. He āwhina anō hoki te hoatu i ngā NSAID, i ngā steroids rānei i te wā e "whakaekea ana".
• Ngā mate NLRP3: E whakamahia angitu ana ngā rongoā ārai mate pēnei i te canakinumab, rilonacept, me te anakinra mō tēnei.
• AOSD: He maha ngā momo rongoā ārai-mumura e whakamahia ana mō te AOSD. Ko ētahi tauira ko ngā steroids, ngā rongoā ārai-rūmātiki whakarerekē-mate (DMARDs), me ngā koiora.
• Te mate Blau: I runga i ngā tohu o tāu tamaiti, ka whakamātau pea rātou i ngā rongoā ārai mate, ngā aukati i te pūmua mate pukupuku (TNF), me/ranei ngā rongoā kanohi.

He pumau tonu ēnei āhuatanga SAID? Ka memeha atu rānei?

Ka roa te ora o ētahi mate mumura-ā-tinana. Ko ētahi ka roa pea mō ētahi tau, ā, ka memeha haere i te kaumātuatanga. Ka roa te ora o ētahi mate, engari i roto i te wā, ka heke pea te auau me te kaha o ngā whakaekenga. Ka taea e te tākuta o tāu tamaiti te hoatu ki a koe he kōrero motuhake mō te āhua o tāu tamaiti.

He uaua te whakatipu i tētahi tamaiti me te mate mumura-ā-roto. Mena kua pāngia koe e te mate SAID, ka taea e koe te whakamahi i ō wheako whaiaro hei tautoko i te tiaki i tāu tamaiti. Ka taea hoki e koe te whakamahi i ō wheako hei āwhina i tāu tamaiti kia urutau ki tēnei āhuatanga mō tōna oranga katoa.

Ko te mea nui ko te rapu maimoatanga mai i ngā tohunga mohio e mōhio ana ki ngā SAID. Ka taea e ēnei tākuta te āwhina i te whakahaere i ngā tohu o tāu tamaiti, me te āwhina i a ia kia whiwhi i te tamarikitanga pai rawa atu.

Karere Whakamutunga mō te Tango ki te Kāinga

Nō reira, ko tāku tumanako kei a koe ētahi whakaaro mō ngā SAID i kōrerohia e tātou i tēnei rā. Kia maumahara, ki te pāngia tō tamaiti e te kirika maha, kāore he whakamārama, me kōrero koe ki te tākuta mōna . Kaua e wareware noa, me te whakaaro he mea noa.

• Ko ngā SAID he rōpū mate e puta ai te kirika, ā, ka puta mai i tētahi raruraru ki te pūnaha ārai mate.
• He mea tuku iho ēnei i te nuinga o te wā, ā, ka tīmata i te wā taitamariki.
• Ahakoa kāore he rongoā tuturu mō tēnei, kei reira ngā maimoatanga hei whakahaere i ngā tohumate.
• He mea nui kia rapua te taatai ​​tika me te maimoatanga mai i te tākuta motuhake (te rata mate rumatiki).
• Ki te tīmata wawe te maimoatanga, ka taea te ārai i ngā raruraru pēnei i te amyloidosis, ā, ka taea e te tamaiti te ora i te oranga noa.

Mena he pātai anō āu mō tēnei, kaua e mangere ki te pātai atu ki tō tākuta whānau, ki tō tākuta tamariki rānei.