He mate tonu koe? Tērā pea nā te ngoikore o te ārai mate tuatahi!

He maha ngā wā ka pāngia koe, tētahi rānei o tō whānau e te mate? Ka pāngia koe e te makariri, e te rewharewha rānei i ētahi wā, engari ka roa te wā ka ora ake? Ka pāngia rānei koe e te mate kotahi anō, ka pāngia anō hoki? I ētahi wā ko te ngoikore o te pūnaha ārai mate o te tinana, e whawhai ana ki ngā mate. I tēnei rā ka kōrero tātou mō tēnei āhuatanga, arā, ko te mate ārai mate tuatahi, arā, ko te '(Primary Immunodeficiency)'.

He aha te ngoikore o te ārai mate tuatahi?

Ki te kī ngāwari, ko te ngoikore o te ārai mate tuatahi he rōpū o ngā āhuatanga rerekē neke atu i te 400 e kore ai e mahi tika tā tātou pūnaha ārai mate . Whakaarohia pēnei: ​​he rite tō tātou tinana ki tētahi pā. He hōia hei tiaki i tēnei pā. Ko aua hōia ko tā tātou pūnaha ārai mate. Nō reira, ki te ngoikore ēnei hōia, ki te kore rānei e mahi tika, ka taea e ngā hoariri o waho, arā, ngā iroriki pangia (huakita, huaketo, me ētahi atu), te uru ngāwari ki te tinana, ka puta ai ngā mate.

He maha atu anō ngā ingoa e whakamahia ana mō tēnei āhuatanga:

• Te mate ārai mate tuatahi.
• Te Mate Pūnaha Ārai Mate Tuatahi (PIDD).
• Ngā Hapa Whānau o te Ārai Mate (IEI).

He maha ngā wā ka puta mai ēnei āhuatanga i ngā huringa o ō tātou ira, e kiia nei ko ngā "whakarerekētanga ira". Ka tukuna iho ēnei i ia whakatipuranga ki ia whakatipuranga, arā, he mea tuku iho . Engari i ētahi wā ka pāngia te tangata e te mate me te kore he hītori whānau. Ka rongoāhia e ngā tākuta mā te aukati me te whakahaere i ngā mate, me te whakakapi i ngā wāhanga o te pūnaha ārai mate kua ngoikore.

He aha ngā tauira o te ngoikore o te ārai mate tuatahi?

E ai ki taku kōrero i mua, neke atu i te 400 ngā momo o te ngoikore o te pūnaha ārai mate tuatahi. He rerekē ia momo, ā, he rerekē te kaha . Koia te take ka rerekē te tau e puta ai ēnei āhuatanga. Ka puta he raruraru i ētahi momo i te whānautanga mai o te pēpi, i te wā pēpi. Nō reira, ka taea te kite wawe. Engari tera anō ētahi momo kāore i te tino kino. Nō reira, kāore pea koe e mōhio kei a koe tēnei āhuatanga tae noa ki te pakeketanga.

Anei ētahi tauira o tēnei āhuatanga:

• Te Matekore Ārai Mate Taurangi Noa (CVID)
• Ataxia-telangiectasia
• Mate Granulomatous Mau tonu (CGD)
• Te mate DiGeorge
• Te mate pukupuku toto (Te mate pukupuku toto)
• Te ngoikore o te IgA whiriwhiri
• Te agammaglobulinemia hono-X

Kaua e pōhēhē ki ēnei ingoa. He kupu hauora noa iho ēnei. Ko te mea nui ko te rapu tohutohu hauora mēnā he ruarua koe mō te mea kei a koe tēnei mate.

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He aha ngā tohu o te ngoikore o te ārai mate tuatahi?

Mō te tini o te tangata, ko te tohu tuatahi o te ngoikore o te ārai mate tuatahi ko ngā mate auau, pumau, rerekē rānei, he uaua ki te rongoā . Ka tino kino pea ēnei mate, ka pāngia rānei ētahi atu mema o te whānau e ngā raruraru ōrite.

Ko ētahi atu tohu ka kitea pea ko:

• Me tango e koe ngā paturopi i ngā wā maha hei whakaora i ngā mate.
• Ngā raruraru ka puta i muri i te whiwhinga o te kano kano ora.
• Te whēkau nui (Ko te whēkau he okana kei te taha maui o runga o te puku e āwhina ana i te pūnaha ārai mate).
• Ngā kōpū waikura pupuhi (ngā kōpū e ahua ana he puku i te ringa).
• Te ngaronga o te taumaha, te kore rānei e tupu pai (ina koa mō ngā tamariki nohinohi).
• Ngā raruraru nakunaku auau pērā i te korere.
• Ngā mate pūnaha ārai mate ( ngā āhuatanga e whakaeke ai te pūnaha ārai mate o te tinana i ō tātou ake pūtau).

Whakaarohia, he kirika, he maremare tō tamaiti kotahi, e rua rānei i te marama, ā, me hoatu he rongoā paturopi ki a ia. Mēnā rānei, ka puta tonu he ponana kino me he pupuhi i runga i tōna kiri, ā, ka roa te wā e ora ai. Mēnā ka puta tonu ēnei mea, me āwangawanga koe mōna.

He aha te take o tēnei?

E ai ki taku kōrero i mua ake nei, ko te ngoikore o te ārai mate tuatahi ka puta mai i ngā whakarerekētanga ira e pā ana ki ngā wāhanga o tō tātou pūnaha ārai mate, pērā i ngā pūtau me ngā pūmua . Ka taea e ēnei whakarerekētanga ira te meinga ētahi wāhanga o tō tātou pūnaha ārai mate kia:

• Tērā pea kāore i te tino kaha i tō te tikanga.
• Tērā pea he hapa .
• Tērā pea ka ngaro rawa atu .

I waenga i te 50% me te 60% o ēnei āhuatanga ka puta mai i ngā hapa o ngā pūtau e kiia nei ko ngā pūtau toto toto B (ngā pūtau B) . He momo pūtau motuhake ēnei pūtau B i roto i tō tātou pūnaha ārai mate. Ko rātou ngā mea e hanga ana i ngā paturopi , arā, ngā pūmua motuhake e āwhina ana ki te whakangaro i ngā mate pēnei i te huakita me ngā huaketo e uru mai ana ki roto i ō tātou tinana. Nā, whakaarohia, ki te kore ēnei pūtau B e mahi tika, ki te kore e whakaputa i ngā paturopi, ka ngawari ake te pāngia o ō tātou tinana e te mate, tika?

Ko wai kei te nui ake te mōrearea ki te whakawhanake i tēnei mate?

Ka taea e te tangata katoa te pāngia e te PIDD. Engari ki te pāngia tētahi o tō whānau tūturu e tēnei mate, ka nui ake te tūponotanga ka pāngia koe e tēnei mate . I te nuinga o te wā, ka puta ēnei ngoikoretanga ārai mate tuatahi i mua i te 20 tau te pakeke. Waihoki, mō ngā tāneE kīia ana hoki he mea noa tēnei āhuatanga.

He aha ngā raruraru ka pā mai i tēnei?

Ka taea e te ngoikore o te ārai mate tuatahi te whakanui ake i te mōrearea o ngā raruraru i muri mai i te ao. Kei roto i tēnei ko ngā mate pūnaha ārai mate , ētahi mate pukupuku rānei . Ki te kore e rongoatia, ka taea e te PIDD te arahi ki ngā mate tino kino .

Me pēhea te tautuhi a ngā tākuta i tēnei?

Mā tō tākuta e whakatau mēnā kei a koe te PIDD mā te arotake i tō hītori hauora whaiaro me tō hītori hauora whānau, he whakamātautau tinana, me te whakahaere i ētahi whakamātautau taiwhanga .

Hei whakaū i te mate, ka taea e tō tākuta te tono i ngā whakamātautau pēnei i:

• Ngā whakamātautau toto: Ka taea e ēnei te kite i ngā āhuatanga rerekē o te pūnaha ārai mate (hei tauira, he iti ngā taumata paturopi, he iti rānei te maha o ngā pūtau ārai mate).
• Ngā whakamātautau ira: Hei kite i ngā hapa o ngā ira, arā, ngā whakarerekētanga ira.
• Te ine i te rere o te toto: He tikanga tēnei mō te tirotiro i ngā tauira o ngā pūtau pūnaha ārai mate mā te whakamahi i ngā hihi laser motuhake.

Hei tāpiritanga, i ētahi whenua, pērā i te Hononga o Amerika, ka whakahaerehia te tirotiro pēpi hou tata ki ia pēpi hou hei tirotiro mō tētahi momo ngoikore o te pūnaha ārai mate kino (SCID). Mā tēnei ka taea te tautuhi me te rongoā wawe i ngā pēpi me tēnei mate kino.

He aha ngā maimoatanga mō tēnei?

Mena ka kitea he mate ārai mate tuatahi tōu, ko ngā whāinga matua o te maimoatanga he whakahaere i ngā mate o nāianei me te ārai i ngā mate o muri mai. Ko te maimoatanga tika ka whakawhiwhia ki a koe ka whakawhirinaki ki te momo mate kei a koe me te momo PIDD.

Ka tohua pea e tō tākuta ngā rongoā pēnei i:

• Paturopi: Ārai, rongoā rānei i ngā mate kitakita.
• Ngā rongoā ārai huaketo: Āwhina ki te whakaora i ngā mate i puta mai i ngā huaketo.
• Pūmua ārai mate: Ka taea te hoatu mā te uaua (IV) mā te kiri rānei. Ka mahi mā te whakakapi i ētahi o ngā wāhanga o te pūnaha ārai mate kua ngaro (pērā i ngā paturopi he iti rawa).

I ētahi wā, me mahi pokanga hei whakahaere i ngā raruraru i puta mai i te mate. Hei tauira, mēnā he whewhe (he kohinga pūkahukahu i roto i te okana), ka taea te tango mā te pokanga hei tango i te pūkahukahu. Ka āwhina tēnei ki te whakaiti i te mamae me te tere ake te whakaora.

I ngā wā tino kino, ka whakahaerehia pea e te tākuta he whakawhitinga pūtau take.Ka taea te tūtohu. Kei roto i tēnei ko te whakakapi i ngā pūtau pūnaha ārai mate kua pakaru, kua ngaro rānei ki ngā pūtau hou. I roto i tēnei, ka werohia ngā pūtau take (ka taea te whanake hei momo pūtau kē atu) i tangohia mai i tētahi kaituku ki roto i tō tinana. I roto i te wā, ka whanake ēnei pūtau take hei pūtau pūnaha ārai mate noa.

Kua angitu hoki te rongoā ira hei whiringa maimoatanga mō ētahi momo PIDD.

Ka taea te ārai i te ngoikore o te ārai mate tuatahi?

I te mea ko te nuinga o ngā PIDD ka puta mai i ngā whakarerekētanga ira , kāore he huarahi hei ārai i a rātou. Heoi, ki te mea he ngoikore te pūnaha ārai mate tuatahi o tētahi o tō whānau, me whakaaro pea koe ki te tohutohu ira . Mā tēnei ka taea e koe te whiwhi atu i ētahi atu kōrero me ngā aratohu.

He aha te āhua o te hunga e pāngia ana e tēnei mate i te heke mai? (Matapae)

Mā te maimoatanga tika, ka taea e te nuinga o te hunga whai PIDD te noho ora. I ētahi wā, me tango pea koe i te rongoā mō te toenga o tō oranga. Me whakapau kaha hoki koe ki te karo i ngā mate . Anei ētahi tohutohu hei āwhina:

• Me horoi pai ō ringaringa — horoia pai ki te hopi me te wai. Kia tino horoia ō ringaringa i mua atu, ā, i muri hoki i te kai, i muri i te whakamahi i te wharepaku, i muri i te pā ki ngā kararehe, me muri hoki i te pā ki tētahi mea paru.
• Me noho tawhiti atu i ngā wāhi kī tonu i te tangata, me te hunga e mate ana .
• Me whai i ngā tohutohu a tō tākuta mō te werohanga kia tika.
• Kia nui te okiokinga .
• Whāia he kai hauora me he mahere whakakori tinana e pai ana ki a koe.

Mena kei a au, kei te whakapae rānei ahau kei a au, te ngoikore o te ārai mate tuatahi, āhea ahau me toro atu ki te tākuta?

Mena kei a koe tētahi mate kāore e memeha, he tino kino rawa atu, he hokihoki tonu mai rānei, tirohia he tākuta hei tirotiro mō te PIDD. Mena kei a koe kē te PIDD, kōrero tonu atu ki tō tākuta mena kei te pāngia koe e te kirika, e ētahi tohu rānei o te mate . He mea nui tēnei hei ārai i ngā raruraru.

He aha ngā pātai me pātai atu e au ki taku tākuta?

Ki te whakapae koe kei a koe tēnei mate, ki te kitea rānei kei a koe, ka taea e koe te pātai atu ki tō tākuta i ēnei pātai:

• He aha te momo ngoikore o te ārai mate tuatahi kei a au?
• Ka taea tēnei te tuku iho ki aku tamariki?
• He aha te momo maimoatanga e taunaki ana koe?
• He aha ngā pānga taha ka puta mai i te maimoatanga? Me pēhea taku āwangawanga mō ēnei?
• He aha ngā raruraru ka puta mai i tēnei āhuatanga?

He uaua te noho tahi me ngā āhuatanga e pā ana ki te ngoikore o te pūnaha ārai mate tuatahi. Ko ngā mate auau, pumau, me te uaua ki te rongoā ka tino ngoikore, ā, ka pā nui hoki ki tō oranga hinengaro.

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Engari kāore koe e hiahia ki te haere ko koe anake i tēnei haerenga. Tonoa atu ki tō tākuta kia āwhina i a koe ki te kimi i tētahi rōpū tautoko hei kōrero me te whakapuaki whakaaro ki ētahi atu kua pā ki ngā wheako ōrite. He puna nui tēnei hei whakapakari i a koe.

Hei whakamutunga, kia maumahara ki tēnei (Karere hei tango ki te kāinga)

Āe, anei ētahi mea hei maumaharatanga mō te Mate Pūnaha Ārai Mate Tuatahi i kōrerohia e tātou i tēnei rā:

• He mate tēnei e puta mai ana i te ngoikore o te pūnaha ārai mate , he maha ngā wā e ahu mai ana i ngā take ira .
• Ko tētahi o ngā tohu matua ko ngā mate urutā kino, auau hoki, e roa ai te wā e ora ai .
• He maha ngā momo o tēnei, nō reira ka rerekē pea ngā tohu me te kaha o ia tangata.
• He mea tino nui te tautuhi i te mate me te whiwhi i te maimoatanga tika i te wā wawe .
• Mā te maimoatanga, ka taea te whakahaere i te mate, ā, ka taea e te tini o te tangata te noho noa .
• He mea nui kia mahi i ngā mahi hei tiaki i a koe mai i ngā mate urutā .

Mena kei a koe, kei tētahi rānei e mōhio ana koe, kaua e mangere ki te rapu tohutohu hauora. Ko te wawe o te tautuhi i tō mate, ko te nui ake o te tūponotanga ka angitu te maimoatanga. Kia ora tātou katoa!