He aha te Mate Pūkahukahu? Ngā Tohutohu, Ngā Take, me te Rongoā

Ko te mate pūkahukahu he āhuatanga ira tuku iho e pā ana ki te hanga o te mimi me te werawera e to kōpū. Ki te kore e hanga he mimi ngawari, ngāwari te neke e tiaki ana i ōu tūpuna, ka hanga e te hunga mate pūkahukahu he mimi mātotoru, piripiri e taea te aukati i ngā ara nui o ngā pūkahukahu me te pūnaha kai.

He mea whānau tēnei āhuatanga, ka tukuna i roto i ngā whānau mā ngā ira mai i ngā mātua e rua. Ahakoa he āhuatanga nui tēnei mō te ora katoa, ko te mōhio pai atu ki a ia ka āhei te awhina i a koe, i ō whānau rānei ki te whakahaere pai me te ora roa.

He aha te Mate Pūkahukahu?

Ka puta te mate pūkahukahu ina kore e mahi tika ngā kōpeke e rua o te ira motuhake e kiia nei ko te CFTR. Ko tēnei ira te tikanga e āwhina ana ki te whakahaere i te taurite o te tote me te wai i roto i ō kōpū. Ki te he, ka hanga e tō tinana ngā wai mātotoru, piripiri.

Whakaarohia te mimi noa rite ki te hipoki tiaki e ngāwari te neke. I te mate pūkahukahu, ka rite tēnei mimi ki te kirikiri mātotoru. Koinei te pānga nui ki ō pūkahukahu me tō pūnaha kai, ahakoa ka uru atu ētahi atu tūpuna.

E pā ana te āhuatanga ki te 1 i roto i te 2,500 ki te 3,500 o ngā pēpi hou, ā, ko tētahi o ngā mate ira tuku iho nui rawa atu. E pā ana ki te iwi katoa, ahakoa ka kitea pinepine i te hunga o te whenua o te Raki o Ūropi.

He aha ngā Tohutohu o te Mate Pūkahukahu?

Ka rerekē pea ngā tohutohu o te mate pūkahukahu mai i te tangata ki te tangata, ā, ka whakawhirinaki pea ki te hunga tūpuna e pā ana. He iti ngā tohutohu o ētahi, ka puāwai haere, ka kitea ētahi atu raruraru nui i te timatanga o te ora.

Koinei ngā tohutohu matua ka kitea pea e koe i roto i te pūnaha manawa:

• Te mare mare tonu e whakaputa ana i te mimi mātotoru, piripiri
• Ngā mate pūkahukahu maha penei i te mate huhu rānei i te bronchitis
• Te wheezeng rānei te poto o te manawa i ngā mahi o ia rā
• Te ihu kōpū rānei ngā mate ihu maha
• Ngā polyps ihu (ngā tipu iti i roto i te ihu)

Ka rite te nui o ngā tohutohu kai ki te whakatau:

• Ngā paru momona, nui e uaua ana ki te horoi
• Te iti o te taumaha ahakoa he pai te hiahia kai
• Te kōpū mamae rānei te pupuhi i muri i ngā kai
• Te kiri tote-reka ina kihi rānei te pā atu ki te tangata

Ka kitea hoki e ētahi ngā tohutohu iti ake e taea te whanake i te wa roa. Ka uru pea ēnei ki te mate huka (na te mea ka pā pea te pancreas), ngā raruraru ate, te mate momona rānei i te pakeketanga. Ko te mea nui kia mahara ko te mohiotanga wawe me te rongoā ka puta he rerekētanga nui ki te whakahaere i ēnei tohutohu.

He aha ngā momo o te Mate Pūkahukahu?

Kāore rawa he momo motuhake o te mate pūkahukahu i te tikanga, engari ka whakarōpūtia e ngā tākuta i runga i ngā tohutohu e tino kitea ana. Ka āhei tēnei ki te hanga i te mahere rongoā pai mō ia tūāhua.

Ko te whakarōpū tino noa e aro ana ki ngā pūnaha tūpuna matua e pā ana. He tohutohu manawa te nuinga o ētahi, me ngā mate manawa maha me ngā raruraru manawa hei wero nui. Ka nui ake pea ngā raruraru kai o ētahi, me ngā raruraru ki te tango kai me te pupuri i te taumaha hauora.

He tokomaha te kite i te huinga o ngā tohutohu manawa me ngā tohutohu kai. He momo iti ake hoki kei reira ngā tohutohu ngawari ake kaore pea e kitea tae noa ki te pakeketanga. He pai ake te mahi pūkahukahu o ēnei tangata, engari ka hiahia pea ki te tiaki me te tirotiro tonu.

He aha ngā Take o te Mate Pūkahukahu?

Ko ngā huringa (mutations) i roto i te ira e kiia nei ko te CFTR, e tū ana mō te Cystic Fibrosis Transmembrane Conductance Regulator, te take o te mate pūkahukahu. Ko tēnei ira te tikanga e āwhina ana ki te whakahaere i te nekehanga o te tote me te wai ki roto, ki waho atu hoki o ō kōpū.

Mō te tangata kia pangia e te mate pūkahukahu, me whiwhi ia i tetahi kōpeke he o tēnei ira i ia mātua. Ki te whiwhi koe i tetahi kōpeke he anake, ka kiia koe he "kaikawe" engari kaore pea e pangia koe. Heoi, ka taea e koe te tuku i taua ira he ki ō tamariki.

Neke atu i te 1,700 ngā mutations rerekē e taea te pā ki te ira CFTR, ahakoa he maha atu ētahi i ētahi atu. Ko te mutation tino noa, e kiia nei ko te F508del, e whakaatu ana i te 70% o ngā take puta noa i te ao. Ka taea e ia mutation te pā ki te āhuatanga o te āhuatanga ki te hauora o te tangata.

He āhuatanga ira noa iho tēnei, ko te tikanga kāore i puta mai i tetahi mea i mahi, kāore rānei i mahi ngā mātua i te wa hapu. Kāore hoki e pā, no reira kāore e taea te hopu mai i tetahi atu, te hora atu rānei ki ētahi atu.

Nōhea te haere ki te Tākura mō te Mate Pūkahukahu?

Me whakapiri atu koe ki te kaiwhakarongo hauora ki te kite koe i ngā tohutohu manawa rānei kai, inā koa i ngā tamariki. Ko te mare mare e roa atu ana i ngā wiki torutoru, e whakaputa ana i te mimi mātotoru, e hoki mai ana rānei e tika ana kia whakarongohia.

Tātai atu ki ngā tohutohu kai whero penei i ngā paru e momona rawa ana, e rere ana i roto i te wharepaku, he kakara nui rānei. Ko te iti o te taumaha i ngā tamariki ahakoa te kai pai tētahi atu tohu nui e kore e tika kia warewarehia.

Ki te whai koe i te hītori whānau o te mate pūkahukahu, ka taea e te tohutohu ira te awhina i a koe ki te mārama ki ō tūponotanga i mua i te whakamahere i te hapu. He maha ngā tokorua e kite ana i tēnei mōhiohio hei awhina mō te whakatau mō ō rātou mahere whānau.

Mō te hunga kua whakatauhia, he mea nui ngā tirotiro auau ahakoa te pai o te ngākau. Ko te rongoā wawe o ngā raruraru ka aukati i ngā raruraru nui ake i muri mai.

He aha ngā Tūponotanga mō te Mate Pūkahukahu?

Ko te tūponotanga matua mō te mate pūkahukahu ko te whai mātua e kawe ana i te ira CFTR he. Na te mea he āhuatanga ira tuku iho tenei, me tuku e ngā mātua e rua he kōpeke o te ira i hurihia kia whanake te āhuatanga i tō tamaiti.

He wāhi te iwi i roto i ngā taumata tūponotanga, ahakoa ka taea te pā te mate pūkahukahu ki te iwi o tetahi tūāhua:

• Ko ngā Pākehā o te Raki o Ūropi te tūponotanga teitei rawa atu (e 1 i roto i te 25 o te iwi he kaikawe)
• He 1 i roto i te 46 te kaikawe o ngā Hīpani Amerika
• He 1 i roto i te 65 te kaikawe o ngā Āpirika Amerika
• Ko ngā Āhia Amerika te kaikawe iti rawa atu i te 1 i roto i te 90

Ko te whai mema whānau e pangia ana e te mate pūkahukahu ka piki ake tō tūponotanga ki te kaikawe. Ki te whakamahere koe i tetahi whānau, kei a koe ngā awangawanga mō ngā tūponotanga ira, ka taea e te tohutohu ira te tuku i ngā whakaaro me te māhaki.

He aha ngā Raruraru pea o te Mate Pūkahukahu?

Ahakoa te whakaaro ki ngā raruraru ka āhei te nui, ko te mōhio ki a rātou ka āhei te awhina i a koe ki te mahi tahi me tō rōpū hauora ki te aukati, ki te whakahaere rānei i a rātou. Ko te nuinga o ngā raruraru ka whanake haere, ka taea te rongoā ina kitea wawe.

Ko ngā raruraru manawa te tino awangawanga:

• Ngā mate pūkahukahu roa e taea te whakarawe i te kiko pūkahukahu i te wa roa
• Te pūkahukahu hinga (pneumothorax) mai i te hau e rere ana ki te kohanga uma
• Te kore manawa i ngā take whanake
• Te sinusitis roa me ngā polyps ihu

Ka taea e ngā raruraru pūnaha kai te pā nui ki te kai me te kounga o te ora:

• Te kore o te pancreas, e uaua ana ki te kai momona me ngā pūmua
• Te mate huka ina kore e taea e te pancreas te whakaputa i te insulin
• Te mate ate mai i ngā ara bile kua aukati
• Ngā aukatinga kopū, inā koa i ngā pēpi hou
• Ngā ngoikore kai nui ahakoa te kai pai

Ko ngā raruraru iti ake engari he mea nui ko ngā raruraru wheua (osteoporosis), ngā raruraru momona i ngā tāne me ngā wāhine, me te mate wai nui i te wā wera rānei i te mate. Ko te rongo pai ko te tiaki hauora tika, he tokomaha ngā tangata e pangia ana e te mate pūkahukahu e ora ana tae noa ki te pakeketanga, e ora ana i te ora kaha, whai hua.

Me pēhea te aukati i te Mate Pūkahukahu?

Na te mea he āhuatanga ira tuku iho te mate pūkahukahu, kāore e taea te aukati i te tikanga noa. Heoi, ka taea e te tohutohu ira me te whakamātautau te awhina i ngā mātua e whakaaro ana ki te whakamahere i te whānau ki te mārama ki ō rātou tūponotanga me te whakatau i ngā whakatau.

Ki te whakamahere koe i tetahi hapu, kei a koe te hītori whānau o te mate pūkahukahu, ka taea e te whakamātautau kaikawe te whakatau mena kei a koe me tō hoa te ira. Ka taea e tēnei whakamātautau toto ngāwari te tuku i ngā mōhiohio nui mō ngā whakatau mahere whānau.

Mō ngā tokorua kei reira ngā hoa e rua he kaikawe, ko ngā kōwhiringa ko te whakamātautau i mua i te whānautanga i te wa hapu, te whakamātautau ira i mua i te whakatō i te whakamahinga o te IVF, te whakamahi rānei i ngā hua manu rānei. Ka taea e te tohutohu ira te awhina i a koe ki te mārama ki ēnei kōwhiringa kaore he pēhanga, he whakahe rānei.

He maha ngā kawanatanga e whakauru ana i te mate pūkahukahu ki ngā kaupapa tirotiro pēpi hou, ko te tikanga ko te kite wawe me te rongoā ka tīmata tonu ina whānau mai te pēpi me te āhuatanga.

Me pēhea te Whakatau i te Mate Pūkahukahu?

Ko te whakatau i te mate pūkahukahu te tikanga he maha ngā whakamātautau e mahi tahi ana ki te tuku i ngā whakaahua mārama ki ngā tākuta. Ko te whakamātautau werawera te paerewa koura, ā, e ine ana i te nui o te tote i roto i tō werawera.

I te whakamātautau werawera, ka whakaohoohohia he wāhi iti o te kiri (i te ringa pea) kia whakaputa werawera mā te hiko iti. Katahi ka kohia te werawera ka wetewetehia mō te nui o te tote. He nui ake te tote o te hunga mate pūkahukahu i roto i ō rātou werawera i te tikanga.

Ka taea e te whakamātautau ira te kite i ngā mutations motuhake i roto i te ira CFTR. He mea whai hua tēnei ina he mārama ngā hua whakamātautau werawera, kei reira hoki te hītori whānau kaha o te āhuatanga. Ka taea e ngā whakamātautau toto te kite i ngā huringa ira tino noa e hono ana ki te mate pūkahukahu.

Ka uru pea ngā whakamātautau atu ki ngā whakamātautau mahi pūkahukahu ki te kite i te pai o te mahi o ō pūkahukahu, ngā X-rays uma ki te titiro ki te whakarawe pūkahukahu, me ngā tauira paru ki te tirotiro i ngā raruraru kai. Ka tono pea tō tākuta i ngā whakamātautau ki te tirotiro i tō mahi pancreas me tō tūāhua kai katoa.

He aha te Rongoā mō te Mate Pūkahukahu?

Ko te rongoā mō te mate pūkahukahu e aro ana ki te whakahaere i ngā tohutohu, te aukati i ngā raruraru, me te pupuri i te kounga ora pai rawa atu. Ahakoa kāore ano he rongoā, kua pai haere ngā rongoā, ā, kei te haere tonu te pai ake.

Ko te whakakorenga ara hau he pūtake o te rongoā manawa. Koinei ngā tikanga me ngā taputapu e āwhina ana ki te wewete me te tango i te mimi mātotoru mai i ngā pūkahukahu. Ka whakaako tō rōpū hauora i a koe i ngā mahi manawa motuhake, ka tūtohutia pea ngā taputapu penei i ngā weti wiriwiri rānei ngā oscillators ringa.

He wāhi nui ngā rongoā ki te whakahaere i te āhuatanga:

• Ka āwhina ngā kaiwewete mimi ki te ngāwari ake te mare
• Ka whakatuwhera ngā bronchodilators i ngā ara manawa mō te manawa ngāwari ake
• Ka whakaiti ngā rongoā anti-inflammatory i te mumura pūkahukahu
• Ka rongoā ngā antibiotics me te aukati i ngā mate pūkahukahu
• Ka āwhina ngā kaiwhakahaere CFTR (ngā rongoā hou) i te pūmua he kia pai ake te mahi

Ko te rongoā kai te nuinga e whakauru ana i ngā taapiri enzyme pancreas e tangohia ana me ngā kai hei awhina i te kai pai. Ko ngā hua hua-wai (A, D, E, me te K) te nuinga e hiahiatia ana na te mea he uaua te tango i a rātou i te tikanga.

He mea nui te tautoko kai, te nuinga e hiahia ana ki te kai nui-calorie, nui-momona hei pupuri i te taumaha hauora. Ko te mahi tahi me te kaiwhakaako kai kua mōhio ki te mate pūkahukahu ka puta he rerekētanga nui ki te whakahaere i ngā hiahia kai.

Me pēhea te tango i te rongoā kāinga i te wā o te Mate Pūkahukahu?

Ko te whakahaere i te mate pūkahukahu i te kāinga e hiahia ana ki te whakatū i ngā mahi o ia rā e puta mai ana hei mea noa penei i te horoi i ō niho. Ko te matua ko te pumau i te mea he tino pai, ā, ko ngā kaha iti o ia rā ka taea te whakanui ake i ngā whakapainga i te wa roa.

Me puta te whakakorenga ara hau i te iti rawa e rua i te rā, ahakoa ka tūtohu pea tō tākuta i ngā hui maha ake i te wā o te mate. Rapua ngā tikanga e mahi ana mō tō oranga, ahakoa ko te whakamahi i te weti wiriwiri i te wā e matakitaki ana koe i te pouaka whakaata, te mahi rānei i ngā mahi manawa i roto i te kaukau.

He mea nui te noho makuku, inā koa i te wā wera rānei ina mate koe. Ka ngaro atu tō tinana i te tote nui atu i te tikanga, no reira ka hiahia pea koe ki te tāpiri i te tote atu ki tō kai, ki te whakamahi rānei i ngā otinga whakaora wai waha i te wā o te mate rānei te werawera nui.

He pai rawa te whakakori tinana mō te mahi pūkahukahu me te hauora katoa. Ko te kaukau, te hikoi, te hikoi paihikara, tetahi mahi rānei e pai ana ki a koe ka āhei te awhina i te wetewete i te mimi me te whakapakari i ō uaua manawa. Tīmata haere haere, hanga haere haere me te aratohu a tō tākuta.

Pupuri i te puka tohutohu ki te aroturuki i ngā tauira i roto i tō hauora. Tuhia ngā huringa i te mare, ngā taumata kaha, te hiahia kai rānei. Ka āhei tēnei mōhiohio ki tō rōpū hauora te whakarite i ngā rongoā me te hopu i ngā raruraru wawe.

Me pēhea te whakarite mō tō hui tākuta?

Ko te whakarite mō tō hui ka āhei te awhina i a koe ki te whakamahi i tō wā ki tō rōpū hauora. Tīmata mā te tuhituhi i ngā tohutohu katoa kua kitea e koe mai i tō toro whakamutunga, tae atu ki te wā i tīmata ai rātou me te aha e pai ake ai rānei e kino ake ai rātou.

Kawe mai he rārangi o ngā rongoā, ngā taapiri, me ngā rongoā katoa e whakamahi ana koe i tēnei wā. Whakauruhia te maha o te wa e tango ana koe me ngā pānga taha kua kitea e koe. Kaua e wareware ki te whakahua i ngā rongoā-i-te-kāinga me ngā taapiri otaota.

Whakaritea ngā pātai i mua kia kaua e wareware i ngā awangawanga nui i te wā o te hui. Ko ngā pātai noa pea ko te uiui mō ngā rongoā hou, te kōrero mō ngā herenga mahi, te whakamārama rānei i ngā tohutohu rongoā.

Ki te taea, kawe mai he mema whānau rānei he hoa hei awhina i te mahara ki ngā mōhiohio i kōrerotia i te wā o te toro. Ka taea e ngā hui hauora te nui, ā, ko te whai tautoko ka taea te awhina i a koe ki te tukatuka i ngā mea katoa.

Kohia ngā hua whakamātautau rānei ngā rēkōta hauora mai i ētahi atu kaiwhakarato mai i tō toro whakamutunga. Ka hoatu tēnei ki tō tākuta he whakaahua katoa o tō tūāhua hauora o nāianei me ngā huringa kua puta.

He aha te tango matua mō te Mate Pūkahukahu?

He āhuatanga ira tuku iho nui te mate pūkahukahu, engari ehara i te ārai ki te ora whai hua, kaha. Me te tiaki hauora tika, ngā mahi whakahaere o ia rā, me ngā pūnaha tautoko kaha, he tokomaha ngā tangata e pangia ana e te mate pūkahukahu e whai ana i te mātauranga, ngā mahi, ngā hononga, me ngā mahi e hiahia ana rātou.

Ko te mea nui kia mahara ko te whakatau wawe me te rongoā pumau ka puta he rerekētanga nui ki ngā hua roa. Ki te whakaaro koe ki te mate pūkahukahu i roto i a koe, i tetahi hoa aroha rānei, ko te rapu i te aromatawai hauora wawe ka taea te whakatū i te wāhi mō te whakahaere hauora pai ake.

Kei te haere tonu te rangahau ki te kawe mai i te tumanako hou, me ngā rongoā e pai ake ana, me ngā rongoā hou e puta mai ana. He kaha, he tautoko te hapori mate pūkahukahu, e tuku ana i ngā rauemi me ngā hononga e taea te whakaiti i te wehe.

Kia mahara ko te whakahaere i te mate pūkahukahu he mahi rōpū e whakauru ana i a koe, tō whānau, me ō kaiwhakarato hauora. Ko te kōrero whakatuwhera, te tiaki pumau, me te noho mōhio ki tō āhuatanga ko ō taputapu pai rawa atu mō te ora pai me te mate pūkahukahu.

Ngā Pātai Nui e ui ana mō te Mate Pūkahukahu

Ka taea e ngā pakeke te whanake i te mate pūkahukahu i muri mai o te ora?

Kāore, he āhuatanga ira tuku iho te mate pūkahukahu e whānau mai ana koe. Heoi, he iti ngā tangata he momo ngawari ake kaore e kitea tae noa ki te pakeketanga. Ka pangia pea ēnei tangata i ngā tohutohu iti mo ngā tau, i whakaarohia ai ki ētahi atu āhuatanga penei i te mate huango rānei ngā mate manawa maha.

He pā te mate pūkahukahu?

Kāore rawa he pā te mate pūkahukahu na te mea he āhuatanga ira tuku iho. Heoi, he nui ake te tūponotanga o te hunga mate pūkahukahu ki ētahi mate huaketo, ā, ka taea e ēnei huaketo te hora atu i waenga i ngā tangata e pangia ana e te mate pūkahukahu. Ko te take i nui ai ngā tikanga whakahaere mate i ngā wāhi hauora me ngā hapori CF.

Ka taea e te hunga mate pūkahukahu te whānau tamariki?

He tokomaha ngā tangata mate pūkahukahu e taea te whānau tamariki, ahakoa ka pā pea te momona. E 95% o ngā tāne mate pūkahukahu he raruraru momona na te aukatinga o ngā ara mani, engari ka taea e ngā hangarau whakaputa uri te awhina. Ka iti pea te momona o ngā wāhine mate pūkahukahu engari ka taea pea te hapu i te tikanga me te whakahaere hauora tika.

He aha te roa o te ora mō te tangata mate pūkahukahu?

Kua pai haere te roa o te ora i ngā tekau tau kua pahure. I tēnei wā, ko te tau ora toharite i whakaarohia kei waenganui o ngā tekau tau e wha tekau, ā, kei te haere tonu te piki ake i te pai ake o ngā rongoā. He maha ngā take e pā ana ki ngā hua takitahi, tae atu ki te wā e tīmata ai te rongoā, te uru atu ki te tiaki motuhake, me te whakahaere hauora katoa.

Me karo pea e te hunga mate pūkahukahu ētahi mahi?

Ko te nuinga o te hunga mate pūkahukahu e whakaohoohohia ana kia noho kaha, na te mea he pai te whakakori tinana mō te mahi pūkahukahu. Heoi, me whakarite ngā mahi i runga i te mahi pūkahukahu takitahi me te hauora katoa. Ko te kaukau te nuinga he whakakori tinana pai, ahakoa ka hiahia pea ki te whakaiti i ngā mahi i ngā taiao puehu rānei paru. Ka taea e tō rōpū hauora te tuku i ngā tūtohu mahi takitahi.