Kei te mōhio koe ki tēnei mate whatukuhu onge? (Atypical Hemolytic Uremic Syndrome - aHUS)

He aha te mea ka tupu mēnā ka puta he toto totoka i roto i ngā oko toto iti o ō whatukuhu, ka aukati i te rere o te toto ki ō whatukuhu? He mea whakamataku te whakaaro, kāore? Koinei tonu te mea e kōrerohia ana i tēnei rā. Ko te ingoa o tēnei ko te Atypical Hemolytic Uremic Syndrome, aHUS rānei. Ahakoa kāore e taea te whakaora, ka taea te whakahaere pai mā te maimoatanga tika . Nō reira, kia ako tātou mō tēnei mea.

He aha te rerekētanga i waenga i te HUS Āhuakore me te HUS Tūturu?

Kua rongo pea koe i tētahi mate e kiia nei ko te HUS. Ka kiia e mātou ko te "Typical HUS". He mate huakita pēnei i te E. coli, e puta ai te mate korere. Engari he rerekē te mate e kōrerohia ana e tātou i tēnei rā, arā, ko te aHUS.

Ka taea tēnei āhuatanga, e kiia nei ko te aHUS, te puta i ngā tau katoa. Mō ngā tamariki nohinohi, ka pāngia ngā tama me ngā kōtiro e te ōrite. Heoi, i a rātou e pakeke haere ana, ka nui ake te tūponotanga ka pāngia ngā wāhine e te mate. Nā te mea ko te hāputanga te take nui o te mate. He tino onge, ā, e kī ana ētahi rangahau e rua noa iho i roto i te miriona tāngata e pāngia ana e te mate.

He aha te take e whanake ai a aHUS?

He whakarāpopototanga noa iho, he maha ngā tāngata e pāngia ana e te aHUS, he huringa ira, kei roto i ō rātou tinana. Whakaarohia he rite ki te mea he 'pātene' kei roto i tō tinana ka taea te whakaputa i tēnei mate. Engari ko te mau noa i taua pātene kāore e puta aunoa te mate. Me whai mea kei waho hei 'whakakā', hei whakahohe rānei. Ka kiia ēnei he 'whakaoho'.

Ko ngā mea matua ka pā mai ko:

• Te haputanga
• Ētahi mate pāwera
• Matepukupuku
• Ētahi rongoā
• He whakawhitinga okana
• Ko ētahi āhuatanga hauora roa (pēnei i te sclerosis pūnaha, te toto toto tiketike kino rānei)

He aha ngā tohu?

Ko ngā tohumate o te aHUS ka puta ohorere i muri i te putanga mai o tētahi mea e whakaoho ana i te mate. Ka taea e ngā putanga te ngawari, te kino rānei. Mēnā he ngawari, kāore pea ngā whatukuhu e tino pāngia, engari i ngā take kino, ka arahi pea ki te ngoikore o te whatukuhu .

Ngā tohu ka pā ki a koe i ngā wāhanga tuatahi:

• Ngā mamae tinana me te ngenge nui
• Te āhua o te kore hauora

He mate haere tonu tēnei. Ko te tikanga ka kino haere ngā tohu i te roanga o te wā, inā koa mēnā kāore i te kitea wawetia. Ko ō whatukuhu te nuinga e pāngia ana e te aHUS. Heoi, ko ētahi atu okana, pērā i te roro, te ate, ngā pukahukahu, me te ngākau, ka pāngia hoki e te aukati i ngā oko toto.

Me pēhea te tautuhi i te mate?

Mena kāore anō kia pāngia tētahi o tō whānau e te mate i mua, he uaua pea te tautuhi i te aHUS. I te nuinga o te wā, ko te tohunga roro , ko te tohunga toto rānei te tangata pai rawa atu kia mōhio ki tēnei. Ka aro nui rātou ki ngā āhuatanga kua whakahuatia i te ripanga i runga ake nei, ā, ka tukuna koe ki ngā whakamātautau e tika ana.

He aha ngā kōwhiringa maimoatanga?

Waimarie, e rua ngā rongoā kua whakaaetia mō te aHUS.

• `Eculizumab (Soliris)`
• `Ravulizumab-cwcz (Ultomiris)`

Nō roto ēnei e rua i tētahi momo rongoā e kiia nei ko ngā 'monoclonal antibodies'. He māmā noa iho, he pūmua hangahanga ēnei e mahi ana pērā i ngā antibodies tūturu o te tinana. Ka whakahaere i tētahi wāhanga o te pūnaha ārai mate o te tinana, ā, ka aukati i te toto e totoka ana.

Ka taea e te rongoā e kiia nei ko te "Eculizumab" te whakanui ake i te maha o ngā pereti toto me ngā toto whero i roto i tō toto. Mēnā ka tīmata wawe te maimoatanga , ka taea e tēnei rongoā te whakakore i ētahi o ngā kino o ngā whatukuhu.

Ka hoatu ēnei rongoā e rua mā te werohanga. Ka pā mai pea ngā pānga taha iti, pērā i te ānini, ngā tohumate rewharewha, te mamae o te puku, me ngā mamae o te tinana. Ko te mea nui, kei reira te mōrearea o ngā mate kino, pērā i te meningitis (te mate meningococcal), ina tangohia ēnei rongoā. Nō reira, ka kī atu tō tākuta kia werohia koe mō tēnā, ā, ka hoatu pea e ia he paturopi hei ārai i te mate.

Haunga ēnei rongoā, ka taea hoki te whakamahi i te rongoā plasma . Ko te tikanga o tēnei ko te hoatu i te plasma (te wāhanga wai o te toto) ki te tūroro i tangohia mai i tētahi tangata hauora (te werohanga plasma) te tango rānei i te plasma o te tūroro ka whakakapi ki te plasma hauora (te whakawhiti plasma).

Ki te kore ngā whatukuhu e aro ki tētahi o ēnei maimoatanga, ko te kōwhiringa whakamutunga ko te dialysis whatukuhu , ko te whakawhitinga whatukuhu rānei.

Ngā raruraru pea me ngā āhuatanga ohorere

Haunga te ngoikore o te whatukuhu, ka pā mai pea ētahi atu raruraru i te aHUS.

Te noho tahi me tēnei mate me te hauora hinengaro

He mea noa te pōuri me te manukanuka i te wā e noho tahi ana me tēnei mate mō te wā roa. Ehara i te mea nāu te he. Koia te mea nui kia tiakina tō hauora hinengaro me tō hauora tinana hoki.

• Pātai atu ki tō tīma hauora mō te āwhina: Ka taea e ngā tākuta, ngā nēhi, me ngā kaimahi hapori te ārahi i a koe ki ngā wāhi ka taea e koe te tiki i te tautoko hinengaro e hiahiatia ana e koe.
• Tirohia he kaiwhakatakoto whakaaro: Mā te kōrero ki tētahi kaiwhakatakoto whakaaro whai raihana ka āwhina i te whakamama i tō taumahatanga me te hanga i te kaha hinengaro e hiahiatia ana e koe hei whakatau i tēnei āhuatanga.
• Tiaki i a koe anō: Kia nui te moe. Kimihia ngā huarahi hei whakaiti i te ahotea. Kai i ngā kai e pai ana mō ngā whatukuhu. Whakakorikori tinana kia nui rawa atu. Ka pā nui ēnei mea ki tō oranga whānui.
• Kōrero ki ō whanaunga: Mā te kōrero mō tēnei mea ki te whānau me ngā hoa ka tino whakamarietia koe.