He aha te Cystic Fibrosis? Kia mārama tātou!

Kua rongo pea koe i te kōrero mō ētahi tāngata e whānau mai ana me te mate ira, tika? He mate ira te Cystic Fibrosis (CF). He tokomaha e whakaaro ana he mate tēnei e pā ana ki ngā pūkahukahu anake, nā te mea he mea noa ngā uauatanga manawa me ngā mate pūkahukahu auau i roto i tēnei mate. Engari he uaua ake te kōrero i tērā. Me titiro tātou ki te aha.

He aha rawa te cystic fibrosis (CF)?

Ki te whakarapopoto, ko te cystic fibrosis (CF) he mate ira e puta ai te nui o te hūpē matotoru, piri ki roto i ētahi okana o te tinana. Ka taea e tēnei hūpē matotoru te kino i aua okana me te whakararu i tā rātou mahi.

I te nuinga o te wā, he wai mākū, he angiangi te hūpē i roto i ō tātou pukahukahu me te ihu. Ka pupuri i aua wāhi kia makuku, ka mau hoki i te paru me ngā paru. Engari i roto i te hunga whai CF, ka whakarerekētia te āhua o te whakaputanga o tēnei hūpē e te whakarerekētanga ira . Kua ngaro, kua kore rānei e mahi tika te pūmua e kawenga ana mō tēnei. Nō reira, ka mau ngā tote e whakangawari ana i te hūpē ki roto i ngā pūtau, ka tino matotoru, ka piri hoki te hūpē.

Ahakoa he tokomaha e whakaaro ana he mate pūkahukahu, ko te ingoa o te CF nā te mea ka puta he cysts me te whara (fibrosis) i roto i te pancreas. Ka taea e tēnei kino, me te matotoru o te arai, te aukati i ngā awaawa e tuku ana i ngā whākōkī nakunaku e āwhina ana ki te nakunaku i te kai e kainga ana e tātou. Ka taea e tēnei te aukati i te tinana ki te mimiti tika i ngā matūkai mai i te kai. Haunga ngā pūkahukahu me te pancreas, ka pā hoki ki te ate, ngā sinuses, ngā whekau, me ngā whekau ira tangata.

He mate ira te CF e whānau mai ana me te tangata. Ko te tikanga he mate mō te wā katoa, ā, ka kino haere i roto i te wā. Tērā pea he poto ake te roanga o te oranga o te hunga whai CF i te hunga kāore he CF.

He aha ngā momo matua o te cystic fibrosis (CF)?

Āe, e rua ngā momo matua o te `CF` ka taea te tautuhi:

1. Te mate pukupuku cystic tawhito: He maha ngā whekau o te tinana e pāngia ana e tēnei mate. He maha ngā wā ka kitea te mate i roto i ngā tau tuatahi o te oranga.

2. Te mate pukupuku kiriuhi koretake: He momo CF ngāwari ake, he iti ake te kino. Tērā pea ka pā ki tētahi okana anake, ka puta mai rānei ngā tohu, ka ngaro atu. I te nuinga o te wā ka kitea i roto i ngā tamariki pakeke ake, i ngā taiohi rānei.

He aha ngā tohu o te cystic fibrosis (CF)?

Tērā pea ka pāngia te tangata whai CF e ngā tohu pēnei i:

• Ngā mate pūkahukahu auau (hei tauira, te niumōnia , te bronchitis rānei)Whakaarohia, he ihu pupuhi tonu tō ētahi tamariki nohinohi, he maremare, he wheezing hoki i roto i ō rātou uma, ā, ahakoa te rongoā, ka hokihoki tonu mai, ka hokihoki mai, kāore he whakaoranga. Koinā te āhua.
• Te tuku tūtae tārewa, hinuhinu rānei.
• Te uaua ki te manawa.
• He tangi auau, haruru hoki te wheezing e puta mai ana i te uma.
• Ngā mate pāwera auau o te sinus.
• Te maremare tonu.
• He puhoi te tipu.
• Ko te kore e tupu pai, ahakoa e kai pai ana koe, ā, e whiwhi ana koe i ngā kaora e hiahiatia ana e tō tinana, he āhuatanga tēnei e kore ai koe e taumaha, e hiroki rānei.

Ngā tohu o te fibrosis cystic atypical (Atypical CF)

Tērā pea ka pāngia te hunga whai CF rerekē e ētahi o ngā tohu kua whakahuatia i runga ake nei. I roto i te wā, ka pāngia pea rātou e ngā āhuatanga pēnei i:

• Te sinusitis mau tonu.
• Ngā polyps ihu.
• Ka taea e ngā taumata electrolyte rerekē o te tinana te arahi ki te matewai, te whiu wera rānei.
• Te korere.
• Te mate pāwera.
• Te whakahekenga taumaha koretake.

He aha ngā take o te mate pukupuku kiriuhi (CF)?

Ko te tino take o te CF he whakarerekētanga ira (rerekētanga, whakarerekētanga rānei) i roto i tētahi ira e kiia nei ko te CFTR. Ka hangaia e te ira CFTR tētahi pūmua e mahi ana hei awaawa katote i runga i te mata o ngā pūtau. Whakaarohia he rite ki tētahi kēti iti i roto i te kiriuhi pūtau. Mā ēnei kēti ka taea e ētahi matūriki te haere.

Ko te pūmua i hangaia e te ira `CFTR` he mea mahi hei kuaha mō ngā iona kōhaita (he momo tote he utu hiko kino). Ina puta ngā iona kōhaita i te pūtau, ka kumea mai hoki te wai. Koinei te wā ka angiangi, ka pahekeheke te hūpē. Engari i roto i te hunga whai `CF`, kāore tēnei tukanga e tika ana nā ngā whakarerekētanga ira i roto i te ira `CFTR`. Kātahi ka mau ngā iona kōhaita ki roto i ngā pūtau, ka waiho te hūpē kia matotoru, kia piri.

He rerekē ngā momo whakarerekētanga ira CFTR (ngā akomanga I ki te VI). Kāore ētahi whakarerekētanga ira e whakaputa i tētahi pūmua, ko ētahi he iti noa te nui o te pūmua e whakaputa ana, ā, ko ētahi kāore e whakaputa i te pūmua e mahia ana e rātou.

He mate whānau mai rānei te cystic fibrosis (CF)?

Ae, he mate ira tuku iho te `CF` mai i te whānautanga. Ka riro i te tangata whai `CF` ngā tārua e rua o tēnei ira `CFTR` kua whakarerekētia – tētahi mai i te whaea, tētahi mai i te pāpā (e kiia ana tēnei ko te tukunga iho `autosomal recessive` ).

Kāore e hiahiatia kia pāngia ō mātua e te CF kia pāngia ai koe e te CF. Inaa, ko te nuinga o ngā whānau kāore he hītori whānau mō te CF. Ko te tangata kotahi anake te kape o te ira kua whakarerekētia ka kiia he kaikawe . Kāore ngā kaikawe e whakaatu i ngā tohu o te CF.

Ka taea hoki e ngā pakeke te pāngia e te cystic fibrosis (CF)?

Kāo, i whānau mai koe me te whakarerekētanga ira e hua ai te CF. Heoi, ki te tino ngawari ngā tohu, ki te haere mai, ka haere atu rānei, kāore pea ētahi tāngata e kitea tae noa ki muri i te ao, tae noa ki te pakeketanga.

He aha ngā raruraru pea ka pā mai i te CF?

Ka taea e te CF te whakararuraru i ngā raruraru pēnei i:

• Ngā Mate Pukupuku: Ka mau te hūpē matotoru i ngā huakita i roto i ō pukahukahu me ō ara manawa, ā, ka uaua ki a rātou te puta. Ka arahi pea tēnei ki ngā mate pukupuku maha.
• Te ngaronga o te vas deferens i roto i ngā hononga e rua o te whānautanga (CBAVD): I tēnei āhuatanga, kāore i ngā tāne te vas deferens, te ngongo e kawe ana i te parāoa. Nō reira, me āwhina rātou ki ngā maimoatanga whakawhānau mena e hiahia ana rātou ki te whānau tamariki.
• Mate huka: Ka puta te mate huka e pā ana ki te cystic fibrosis nā te kino o te pancreas.
• Te kore kai pai: Ko te kore o te hūpē matotoru i roto i te pūnaha nakunaku me ngā whākōkī repeure e āwhina ana ki te nakunaku kai ka nui ake te mōrearea o te kore kai pai.
• Te Osteopenia me te Osteoporosis: Ka puta pea ngā mate ngoikore wheua nā te kore e taea te mimiti tika i ngā matūkai mai i te pūnaha nakunaku.
• Ngā raruraru o te hāputanga: Ka pā te CF ki te pūnaha nakunaku, ā, ka matekai hoki. Ka piki ake te mōrearea o ngā raruraru hāputanga. Ko te whānautanga wawe te raruraru tino noa.

Me pēhea te tātaritanga o te cystic fibrosis (CF)?

I te nuinga o te wā ka tirotirohia e ngā tākuta ngā pēpi hou mō te CF i te wā o te tirotiro pēpi hou. Ka mahia tēnei mā te tango i ētahi pata toto mai i te rekereke o te pēpi. I roto i te taiwhanga, ka whakamatautauria tēnei tauira toto mō tētahi matū e kiia nei ko te immunoreactive trypsinogen (IRT) . Ka whakaputaina tēnei e te repeure. He nui ake ngā taumata IRT i roto i ngā toto o te hunga whai CF. Ka whakamatautauria ngā pēpi mō te IRT i te whānautanga, ā, i muri i ētahi wiki.

Heoi anō, ko ētahi āhuatanga, pērā i te whānautanga wawe, ka taea hoki te whakanui ake i ngā taumata IRT. Nō reira, kāore te whakamātautau IRT pai e tohu ana he CF tō te pēpi. Mena he teitei ake te taumata IRT o te pēpi i te mea e tumanakohia ana, ka whakahau te tākuta i ētahi atu whakamātautau hei whakatau i te mate.

I ētahi wā (tata ki te 5% o ngā take), kāore pea e kitea e te tirotiro pēpi hou ngā taumata IRT teitei i roto i te tangata whai CF. Kāore rānei koe i whakamātauria mō te CF i te whānautanga. Mena kei a koe, kei tō pēpi rānei ngā tohu o te CF, ka whakahaerehia e te tākuta he whakamātautau werawera , ā, ki te tika, ētahi atu whakamātautau.

Ngā whakamātautau mō te cystic fibrosis (CF)

• Whakamātautau werawera:Ka ine tēnei i te nui o te pūhaumāota i roto i tō werawera. He nui ake ngā taumata pūhaumāota o te hunga whai CF i roto i ō rātou werawera. Koinei te whakamātautau tino motuhake mō te tautuhi i te CF. Heoi, he mea noa pea i roto i te hunga whai CF rerekē.
• Ngā whakamātautau ira: Ka tangohia ngā tauira toto hei tirotiro i ngā huringa o ngā ira e hua ai te CF.
• Ngā whakamātautau whakaahua: Ka whakamahia ngā mea pēnei i te hihi-X o te ihu me te uma hei whakaū, hei tautoko rānei i te tautuhi i te CF. Kāore e taea e ēnei whakamātautau whakaahua anake te tautuhi i te CF.
• Ngā whakamātautau mahi pūkahukahu (PFT): Ka ine ēnei i te pai o te mahi a ō pūkahukahu.
• Ahurea huware: Ka tangohia e tō tākuta he tauira o te huware e puta mai ana i ō pukahukahu ina maremare koe, ka whakamātauria mō ngā huakita. Ko ētahi momo huakita, pērā i te Pseudomonas, he mea noa ake i roto i te hunga whai CF.
• Kohikohi repeure: Mā tēnei ka taea e tō tākuta te kite mēnā he pukupuku, he whara rānei kei roto i tō repeure.
• Te rerekētanga pūmanawa o te ihu (NPD): Ka ine tēnei i te utu hiko iti e noho ana i roto i te arai o te ihu. Ka hangaia tēnei utu e te nekehanga o ngā iona. He iti ake te nekehanga o ngā iona o te hunga whai CF nā te pānga o te CF ki ngā hongere iona.
• Te ine i te au o te puku (ICM): Hei whakahaere i tēnei whakamātautau, ka tangohia e te tākuta tētahi tauira o te kiko o te pūkahukahu. Ka ine te taiwhanga i te nui o te pūhaumāota e tukuna ana mai i tēnei tauira.

Me pēhea te rongoā mō te cystic fibrosis (CF)?

Engari, kāore he rongoā mō te CF. Heoi, mā te āwhina a tētahi tohunga CF me ētahi atu i roto i tō rōpū hauora, ka taea e koe te whakahaere i te mate me ōna tohu. Kei roto i tēnei whakahaere:

• Te pupuri i ngā ara manawa kia mārama, kia tuwhera mā te whakamahi i ngā tikanga manawa me ngā taputapu whakarewa huware.
• Ngā rongoā hei āwhina i te whakatika i ngā raruraru o te pūmua `CFTR` (`CFTR modulators`).
• Ngā rongoā e whakaiti ana i ngā tohu motuhake.
• Kia tino nui, kia tika hoki te nui o ngā kaora e whiwhi ana koe mai i te kai.
• Pokanga.

Ngā tikanga whakawātea ara hau

Mena kei a koe te CF, he maha ngā huarahi hei pupuri i ō ara manawa kia ma:

• Ngā tikanga mare me te manawa: Ka taea e te kaiwhakaora tinana e tohunga ana ki te CF te whakaako i a koe i ngā tikanga hei whakatuwhera i ō ara manawa me te wetewete i te huware.
• Ngā taputapu pēhanga manawa pai (PEP):Ka taea te mau i ēnei taputapu `PEP` ki roto i te waha, hei `kōpare` rānei ki te mata. Ka whakarato i te ātete, nō reira me kaha ake te mahi ki te manawa ki waho. Mā tēnei ka huaki ngā ara manawa, ka panaia te hūpē ki waho. Ko ngā taputapu wiri `PEP` (hei tauira `Flutter®`, `Acapella®`, `AerobikA®`, `RC-Cornet®` ) he momo `PEP` motuhake e whakakotahi ana i te wiri me te kaha ki te wetewete i te hūpē.
• Ngā koti whakawātea ara manawa: E kiia ana hoki he taputapu wiri pakitara uma auau-teitei, he koti pupuhi tēnei e hono ana ki tētahi mīhini. Ka wiri te koti, ka pakaru te huware.
• Te whakaheke i te toto me te patupatu: He tikanga whakaora tinana tēnei. Ka neke koe ki ngā tūranga hei āwhina i te tango i te hūpē mai i ō pukahukahu. Ka pā atu tētahi atu ki tō uma, ki tō tuara rānei hei āwhina i te wetewete i te hūpē. Ka taea tēnei te mahi tahi me ngā tikanga whakaoho maremare.

Ngā kaiwhakatikatika CFTR mō te cystic fibrosis

Ko ngā kaiwhakatikatika CFTR he momo rongoā e āwhina ana ki te whakatika i ngā raruraru ki ngā pūmua i hangaia e te ira CFTR kua whakarerekētia, ā, e whakanui ana i te nui o te pūmua e mahi tika ana i runga i te mata o ngā pūtau. Kāore e rongoā i te CF. Engari kua kitea e ētahi tāngata he whakapainga nui i roto i ō rātou tohu me te roanga o te oranga. Heoi, kāore ēnei maimoatanga kaiwhakatikatika e pai mō te hunga katoa e pāngia ana e te CF, ā, kāore e taea e ētahi te aro atu ki ēnei.

Ko ētahi tauira o ngā `whakarerekētanga CFTR`:

• `Kalydeco® (ivacaftor)`
• ``Orkambi® (ivacaftor/lumacaftor)''
• `Symdeko® (ivacaftor/tezacaftor)`
• `Trikafta® (ivacaftor/tezacaftor/elexacaftor)`

Ētahi atu rongoā mō te cystic fibrosis

Tērā pea ka tohua e tō tākuta ētahi atu rongoā hei whakaiti i te mumura, hei rongoā i ngā mate, hei whakahaere rānei i ngā tohumate. Kei roto i ēnei:

• Ngā rongoā paturopi: Ka tohua pea e tō tākuta ngā rongoā paturopi hei rongoā, hei ārai rānei i ngā mate.
• Ngā rongoā whakapūngao manawa: Ka whakatuwherahia, ka whakangāwarihia hoki ngā ara manawa e ngā rongoā whakapūngao manawa, kia māmā ake ai te manawa.
• Te tote hypertonic e manawahia ana: Ka kukume te tote i roto i ngā otinga tote i te wai, ka angiangi te hūpē, ā, ka māmā ake te maremare.
• Ngā rongoā ārai-mumura: Ka whakaitihia e ēnei rongoā te pupuhi. Kei roto i ēnei ko ngā corticosteroids me ngā rongoā ārai-mumura kore-steroidal (NSAIDS) .
• Ngā whākōkī repeure: Ka āwhina ēnei ki te nakunaku i te kai me te mimiti i ngā matūkai mai i roto.
• Ngā mea whakangawari tūtae: Ka āwhina ēnei i ngā āhuatanga pēnei i te mate pāwera, ā, ka māmā ake te haere o te tūtae.

Kai mō te cystic fibrosis (CF)

Mena kei a koe te CF, he rerekē ō hiahia kai i ērā o te tangata kāore he CF. Nā te CF, kāore pea e taea e tō repe taiaki te hanga, te whakaputa rānei i ngā whākōkī hei āwhina i a koe ki te nakunaku i te kai. Ko te tikanga o tēnei, kāore pea e taea e ō whekau te mimiti tika i ngā matūkai me ngā ngako i roto i tō kai.

Mā tō tohunga CF, mā tō tohunga kai rānei e tūtohu he mahere kai māu. Kei roto pea i ēnei:

• Ka nui ake te kai o ia rā i te kai o te karori. E rua pea te nui o tēnei i te kai o te tangata kāore he CF.
• Te kai i ngā kai he nui te ngako. He mea nui tēnei kia nui ake ai ngā huaora wairewa-ngako.
• Te pupuri i te taumaha tinana teitei ake i te taumaha noa mai i tō tamarikitanga. Ka āwhina tēnei i a koe kia roa ake, kia whānui hoki ōu pukahukahu. Ka āwhina tēnei i ngā tohumate i a koe e pakeke haere ana.
• Te tango i ngā kāpūru tāpiringa whākōkī. Ka āwhina ngā tāpiringa whākōkī i te nakunaku.
• Tāpirihia he tote ki tāu kai. Ka āwhina tēnei ki te whakakapi i te tote tāpiri e ngaro ana i tō tinana i te werawera. He mea nui rawa tēnei i te wā wera, makuku, me te wā e whakakorikori tinana ana. Pātai atu ki tō tākuta mō te nui o te tote e hiahiatia ana e koe i ia rā.

Te pokanga mō te cystic fibrosis (CF)

Tērā pea me pokanga koe mō te CF, mō tētahi raruraru rānei o te CF. Kei roto pea i tēnei:

• Ngā pokanga e pā ana ki te ihu, ki ngā sinus rānei.
• Te pokanga hei tango i ngā ārai o te puku.
• Te whakawhitinga pūkahukahu.
• Te whakawhitinga ate.

He mate morearea te mate pukupuku cystic fibrosis (CF)?

Ae, he mate morearea te CF. Ko te tino take o te mate ko te kino o ngā pukahukahu i puta mai i te hūpē matotoru me ngā mate pūkahukahu auau.

He aha te roanga o te oranga o te tangata e pāngia ana e te cystic fibrosis (CF)?

E ai ki ngā tohunga, i ngā tau tata nei, ko te roanga o te oranga o te tangata i whānau mai me te CF he tata ki te 50 tau. I ētahi tau kua pahure ake nei, i waenga i te 30 me te 40 tau te roanga o te oranga, engari kua piki ake tēnei i ngā tau tata nei nā te whanaketanga o ngā tikanga maimoatanga.

He roa ake te roa o te oranga o te hunga whai CF rerekē i te hunga whai CF noa.

He aha taku e tumanako ai mēnā he CF tōku?

Kāore he rongoā mō te CF. Me whai maimoatanga mōu, mō tō tamaiti rānei mō te wā roa hei whakahaere i tēnei mate. Kei roto i tēnei ko te rongoā i ngā mate pāwera, te pupuri i te kai totika, me te toro atu ki tētahi tohunga CF i ia wā, i ia wā. Heoi anō, kua āwhina ngā maimoatanga hou i ngā tamariki whai CF kia ora pai tae noa ki te pakeketanga, kia pai ake ai te kounga o te oranga.

Ka tino whai hua te maimoatanga ina kitea wawetia te CF. Koia te hiranga o te tirotiro i ngā pēpi hou. Mā te tīmata i ngā maimoatanga pēnei i ngā modulators CFTR i te wā tamarikitanga ka taea te whakapai ake i te hauora mō te wā roa, me te whakanui ake i te roanga o te oranga.

Ka taea te ārai i te CF?

Nā te mea he mate CF kei roto i tō whānautanga, kāore he huarahi hei ārai i tēnei mate. Mena he kawe koe i te whakarerekētanga ira CFTR, ka taea e koe te pātai ki tō tākuta mō ngā whakamātautau ira i te wā e hapu ana me te tūponotanga ka pāngia āu tamariki e te CF.

Me pēhea taku tiaki i ahau anō?

Ko te tiaki i a koe anō me te CF he mahi tahi me tō rōpū hauora ki te whakawhanake i tētahi mahere maimoatanga. Hei noho hauora, me tino whai koe i tēnei mahere. Kei roto i tēnei:

• Me whai pūmau i tāu mahi horoi manawa.
• Te tango i ngā rongoā kia rite ki te whakahaunga.
• Me haere tonu ki ngā wāhi rongoā me tō tīma hauora CF.

Tikina ngā taunakitanga mai i ō tākuta mō tētahi mahere kai hauora me te korikori tinana haumaru e tika ana māu. Pātai atu ki tō tākuta mēnā he whakaaro pai te whakaora i ngā pūkahukahu māu.

Ka taea e koe te whakaiti i tō tupono ki te pangia e te mate mā te karo i te hunga e mate ana, te whakamahi i ngā tikanga horoi ringa pai, me te whiwhi i ngā werohanga kua tūtohutia.

Ka taea hoki e koe te whai wāhi atu ki ngā whakamātautau haumanu e whakamātautau ana i ngā maimoatanga hou mō te CF. Pātai atu ki tō tākuta mēnā he maimoatanga e tika ana māu. Kia tino whiwhi koe i ngā mōhiohio katoa mō ngā painga me ngā mōrearea o ngā whakamātautau haumanu.

Āhea ahau me toro atu ki taku tākuta?

Haere ki ngā wāhi rongoā kua whakaritea me ngā mema o tō rōpū hauora. Kōrero ki tō tākuta mēnā he pātai āu mō tō mahere maimoatanga, mō ō tohumate rānei. Pātai atu ki a rātou me aha koe mēnā he tohu o te mate. Ka taea hoki e koe te kōrero ki a rātou mēnā e hiahia ana koe ki te āwhina mō ngā raruraru pāpori, ngā raruraru kare ā-roto rānei.

Āhea ahau me haere ki te Tari Whawhati Tata (ETU) ?

Mena ka pāngia koe e ēnei tohu kino, haere tonu ki te rūma whawhati tata:

• Te kirika nui (neke atu i te 40 nekehanga Celsius).
• Te uaua ki te manawa.
• Kāore, he iti noa rānei te putanga mimi.
• Te mamae tonu i roto i te uma, i te puku rānei.
• Pōuriuri.
• Pōhēhētanga.
• Te mamae nui o te uaua, te ngoikore rānei.
• Ngā hopukanga.
• He kikorangi te kiri, ngā ngutu, ngā maikuku rānei ('cyanosis' - he tohu pea tēnei nō te iti o te hāora i roto i tō toto, i ō kiko rānei).
• Ki te pai ake, ki te ngaro rānei te kirika, te mare rānei, ka kino anō.

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

Ka taea e koe te pātai atu ki tō tākuta i ēnei pātai:

• He aha ngā kōwhiringa maimoatanga kei a au?
• He aha te mahere kai hauora ka taea e au te whai?
• He aha taku e taea ai te whakahaere i aku tohumate?
• He aha ngā tohu o te mate me tirotiro e au?
• Āhea ahau me kite anō i a koe?
• He aha ngā tohu me haere ahau ki te rūma whawhati tata?
• Kei te hiahia koe ki te tirotiro i ētahi atu mema o te whānau?

He aha te hunga whai CF kāore e tika kia pā tetahi ki tetahi?

Ko te tikanga, e taunaki ana ngā tohunga hauora kia kaua e pā tata atu ki ētahi atu te hunga whai mate pukupuku cystic (CF). Nā te mea ka taea e te hunga whai mate pukupuku te pangia e ngā mate ka taea e ētahi atu te whakahaere. He nui ake hoki te tūponotanga ka horahia e rātou ngā iroriki ki ētahi atu whai mate pukupuku (he uaua hoki ki te whakahaere). Me karo hoki te hunga whai mate pukupuku i te hunga e mate ana.

Hei whakamutunga, tētahi mea (Karere Tangohia ki te Kāinga)

He mea noa te pōuriuri ina kitea he mate mō te wā roa. Heoi, nā ngā maimoatanga hou me te māramatanga pai ake ki te cystic fibrosis, he nui ake te wā hei whakahaere i ngā mahi i ia rā, i ia rā. He maha ngā tāngata whai CF ka taea te tumanako ka ora tonu rātou tae noa ki te pakeketanga. Ko te tamaiti kua kitea he CF i tēnei rā, tera pea ka nui ake ngā whiringa maimoatanga ā muri ake nei.

Huihuia he rōpū o ngā whanaunga me ngā tohunga hauora e whakawhirinaki ana koe kia mārama ai ki ngā mea hei tumanako atu, hei āwhina i a koe ki te whakatau i ngā wero o te oranga o ia rā. Ā, kaua e wehi ki te tiki whakaaro tuarua i ngā wā katoa. Kāore koe i te mokemoke, ā, he tokomaha ngā tāngata ka taea te āwhina i a koe i roto i tēnei haerenga.

` Te mate pūkahukahu, ngā mate ira, ngā mate pūkahukahu, te hūpē, te ira CFTR, te hauora o ngā tamariki, ngā raruraru manawa