He aha te Porphyria? Tohutohu, Take, me te Maimoatanga

Ko te Porphyria tētahi rōpū o ngā mate tino onge e pā ana ki te hanga i te heme e tō tinana, he wāhanga nui o ngā pūtau toto whero. Ki te he te mahi o tēnei tukanga, ka hangaia ngā pūtau e kiia nei ko ngā porphyrins i roto i tō tinana, ā, ka taea e aua mea te whakaeke i te maha o ngā tohu.

Whakaarohia he raina huihuinga whare wānanga tēnei, kei te kore tetahi o ngā mīhini e mahi pai ana. E waru ngā kaupae o tō tinana hei hanga i te heme, ā, ka puta te porphyria ki te pakaru tetahi o ēnei kaupae. Ka pā tēnei pakaru ki tō kiri, pūnaha io, kē, rānei, kei te aha te momo kei a koe.

He aha ngā tohu o te porphyria?

He rerekē ngā tohu o te porphyria, kei te aha te momo kei a koe, engari ka wehewehea rātou ki ngā kāwai e rua: ngā raruraru kiri me ngā whakaeke e pā ana ki tō tinana katoa. He tokomaha kaore e mōhio kei a rātou te porphyria, no te mea ka ngāwari ngā tohu, kē, ka ngāwari te whakaaro he atu take.

Tāpiritia ngā huarahi rerekē e puta ai te porphyria ki roto i tō oranga, kia mahara kei te kore ngā tāngata katoa e pāngia e ēnei tohu katoa:

Tohu e pā ana ki te kiri

Ki te whai koe i tētahi momo e pā ana ki tō kiri, ka kite pea koe i ēnei huringa ina whakaaturia koe ki te rā:

• Te pupuhi me te toka i ngā wāhi e whakaaturia ana ki te rā, pēnei i ō ringa, mata, me ō ringa
• Te nui haere o te tipu o te huruhuru i tō mata me ō ringa
• Te kiri e tino ngawari ana, ā, ka ngāwari te motu
• Ngā wahi pouri kē, mārama rānei o te tae kiri
• Te mātotoru o te kiri, inā te nuinga i ō pūngāwerewere

Ka puta ēnei huringa kiri nā te mea ka tino pā te rā ki tō kiri nā ngā porphyrins. Ahakoa he poto te whakaaturia ki te rā, ka taea e te pupuhi mamae te whakaoho, ā, ka roa ngā wiki hei whakaora.

Tohu whakaeke pakari

Ko ētahi momo porphyria ka whakaeke ngā whakaeke pakari, ka roa ngā rā kē, ngā wiki rānei. Ka timata aua wāhanga i te ngāwari, ka kaha ake:

• Tōki nui o te puku e hohonu ana, me te whakawhāiti.
• Ngāwari me te ruaki e kore e mutu.
• Te kōpuku rānei, te ruaki rānei.
• Te ngoikore o ngā uaua, inā te nuinga i ō ringa me ō waewae.
• Te wiri wiri rānei, te mōrehu rānei o ō ringa me ō waewae.
• Te whakapohehe, te manukanuka rānei, te huringa o te ngākau rānei.
• Te mimi whero pouri, te parauri rānei.
• Te tere o te ngākau me te teitei o te toto.

Ka taea te whakaohooho i ēnei whakaeke e te ahotea, ētahi rongoā, te waiū, te huringa o te homoni rānei. He tino kaha te mamae o te puku, no reira ka tae atu te tini o te iwi ki te ruma ohorere, me te whakaaro kei te mate appendicitis rātou, tetahi atu mate kino rānei.

Ngā tohu onge me te kino

I ētahi wā, ka taea e te porphyria te whakaeke i ngā raruraru nui ake e hiahia ana ki te tiaki hauora tonu:

• Ngā hopu, te ngaro o te ngakau rānei.
• Te ngoikore o ngā uaua e pā ana ki te manawa.
• Te whakapohehe hinengaro, te whāinga rānei.
• Te pararaihi i ngā ringa, i ngā waewae rānei.
• Ngā raruraru manawa e hiahia ana ki te tautoko manawa.

He tino pea ēnei tohu kino i ngā whakaeke ohorere, ā, e whakaatu ana i te take nui o te whakatau tika me te whakahaere.

He aha ngā momo porphyria?

E waru ngā momo porphyria matua, ia momo i puta mai i te raruraru ki tētahi mahi i te hanga heme. Ka whakarōpūtia e ngā tākuta ki ngā kāwai e rua, e whakaū ana i te wāhi e puta mai ana ngā raruraru: ngā momo ohorere e whakaeke ana, me ngā momo kiri e pā ana ki tō kiri.

Ngā porphyria ohorere

Ka taea e ēnei momo te whakaeke i ngā whakaeke ohorere, kino hoki e pā ana ki tō tinana katoa:

• Porphyria tūpato ngā wā (AIP) - Ko te momo tūpato tino noa, e pā ana ki te mamae o te kopu nui me ngā tohu neurological
• Hereditary coproporphyria (HCP) - Ka taea te whakaeke i ngā whakaeke tūpato me te ngawari o te kiri
• Variegate porphyria (VP) - Ka whakakotahi i ngā whakaeke tūpato me ngā raruraru kiri, he maha atu i Āwherika ki te Tonga
• ALA dehydratase deficiency porphyria - He tino onge, te nuinga o te wā ka puta i te tamarikitanga

Ngā porphyrias kiri

Ko ēnei momo e pā ana ki tō kiri ina whakaaturia ki te rā:

• Porphyria cutanea tarda (PCT) - Ko te momo tino noa, e pā ana ki te pupuhi o te kiri me te toka
• Erythropoietic protoporphyria (EPP) - E pā ana ki te mamae wera me te pupuhi me te whakaaturia ki te rā
• Congenital erythropoietic porphyria (CEP) - He tino onge, he raruraru kiri nui mai i te whānau
• Hepatoerythropoietic porphyria (HEP) - He tino onge, ka whakakotahi i ngā raruraru ate me te kiri

He tauira motuhake ōna tohu me ngā mea whakaoho mō ia momo, koia tēnei te take nui o te whiwhi i te taumata tika mō te rongoā tika.

He aha te take o te porphyria?

Ko te nuinga o ngā momo porphyria e puta mai ana i ngā huringa ira e whiwhi ana koe i ō mātua, engari ka taea te whanake i muri i te ora na ētahi atu take. Ko ngā huringa ira e pā ana ki ngā enzymes e āwhina ana ki te hanga heme i roto i tō tinana.

Ko ēnei ngā huarahi matua ka taea te whanake porphyria:

Ngā take ira e tukuna ana

• Ngā tauira ira e tukuna ana i tetahi mātua, i ngā mātua rānei
• Te whakawhiwhi ira dominant autosomal (e hiahiatia ana tetahi kōpeke o te ira mai i tetahi mātua)
• Te whakawhiwhi ira recessive autosomal (e hiahiatia ana ngā kōpeke mai i ngā mātua e rua)
• Te whakawhiwhi ira X-linked (he onge, e tukuna ana mā te chromosome X)

Ahakoa ka whiwhi koe i te huringa ira, ka taea pea te kore e puta mai ngā tohu. He tokomaha ngā tāngata e mau ana i ēnei ira, engari e ora ana i ngā oranga noa, hauora, kaore rawa e mōhio ana kei a rātou.

Ngā take i whiwhi ai

Ka taea e ētahi momo, ina koa te porphyria cutanea tarda, te whanake mai kaore he whakatūpato ira:

• Ngā mate ate, te kino rānei o te ate
• Te nui o te rino i roto i te tinana
• Te mate huaketo Hepatitis C
• Te mate huaketo HIV
• Te nui o te inu waipiro
• Te kai hikareti
• Ētahi rongoā, rauemi kemikara rānei

Ka taea e ēnei take te whakaoho i te porphyria ki ngā tāngata pea he whakapae ira kei a rātou, engari kaore e whanake te mate.

Nōhea te haere ki te taote mō te porphyria?

Me kimi koe i te tiaki hauora mena ka pāngia koe e ngā tohu kaore i te marama e taea ana te tohu porphyria, ina koa ki te haere tonu rātou, ki te rere rānei i roto i tō whānau. Ka taea e te whakamātautau wawe te aukati i ngā raruraru nui, ā, ka āwhina i a koe ki te whakahaere pai ake i te mate.

Whakapa atu ki tō taote wawe mena ka kite koe:

• Te mamae o te kopu e puta mai ana, kaore he take mārama
• Te kiri e pupuhi ana, e tohu ana rānei ngā tohu i te rā
• Te mimi whero pouri, parauri rānei, ina koa i te wā o te mate
• Te ngoikore o ngā uaua e haere ana, e haere mai ana rānei
• Te hītori whānau o te porphyria, ngā whakaeke kaore i te marama rānei

Nōhea te kimi i te tiaki mate tuputupu

Karangahia te 911, haere rānei ki te ruma mate tuputupu tonu mena ka pāngia koe e:

• Te mamae nui o te kopu me te ruaki kaore e mutu
• Te ngoikore o ngā uaua e pā ana ki tō manawa
• Ngā hopu, te ngaro rānei o te mohio
• Te whakapohehe nui, ngā whakairoiro rānei
• Te pararaihi, te kore rānei e taea te neke i ngā ringa, i ngā waewae rānei

Ka taea e ēnei tohu te tohu i te whakaeke porphyria nui e hiahia ana ki te rongoā tonu hei aukati i te kino pumau.

He aha ngā take morearea mō te porphyria?

Ko te mōhiotanga i ō kaupapa morearea ka āhei te āwhina i a koe me tō tākuta ki te whakatau mena me whakamātau koe mō te porphyria, kāore rānei, me tango rānei i ngā mahi hei ārai i ngā whakaeke. He kaupapa morearea ētahi kaore e taea te whakarereke, ētahi atu ka taea te whakahaere.

Ngā kaupapa morearea ira me te whānau

• He matua, teina, te tuahine, tamaiti rānei kei a rātou te porphyria
• He iwi motuhake (he maha ake ngā momo i roto i ētahi taupori)
• He āhuatanga ira atu e pā ana ki te ate

Ngā kaupapa morearea noho me te hauora

He maha ngā take ka piki ake ai tō morearea ki te whanake i te porphyria, ki te whakaoho rānei i ngā whakaeke:

• Te inu waipiro nui
• Te kai hikareti
• Te mate ate mai i tetahi take
• Ngā mate nui o te rino
• Ētahi mate huaketo penei i te hepatitis C, te HIV rānei
• Ko te wahine (ka taea e ngā huringa homoni te whakaoho i ngā whakaeke)
• Te kai kai nui, te nohopuku rānei
• Ngā taumata ahotea nui

Ngā rongoā me ngā whakaoho taiao

Ka taea e ētahi mea te whakaoho i ngā whakaeke porphyria ki te hunga kei a rātou te tūāhua ira:

• Ngā rongoā motuhake (barbiturates, rongoā sulfa, ētahi rongoā mate huaketo)
• Ngā rongoā homoni, ngā huringa rānei
• Te whakaū ki ētahi matū, poizon rānei
• Te poizon arahi

Mēnā kei a koe te porphyria, ka homai e tō tākuta tētahi rārangi o ngā rongoā me ngā mea hei karo kia kaua e whakaoho i te whakaeke.

He aha ngā raruraru pea o te porphyria?

Ahakoa he tokomaha ngā tāngata kei a rātou te porphyria e ora ana i ngā oranga noa me te whakahaere tika, ka taea te whanake i ētahi raruraru mēnā kaore e rongoā tika te āhuatanga, ka puta rānei ngā whakaeke nui. Ko te mōhiotanga ki ēnei mea ka āhei te āwhina i a koe ki te mōhio he aha te take nui o te whai i tō mahere rongoā.

Ngā raruraru whakaeke nui

I ngā whakaeke nui, ka taea te whanake i ētahi raruraru nui pea e hiahia ana ki te tiaki hauora nui:

• Te korenga o te manawa e hiahia ana ki te tautoko o te manawa
• Te ngaunga o te wai me te koretake o te electrolytes
• Te toto teitei e whakaraha ana i nga whekau
• Nga hopu e taea ai te whara o te roro
• Te ngoikore o te uaua mo te wa poto, te roa ranei
• Nga tohu hinengaro tae atu ki te pouri me te awangawanga

Ka tino piki enei raruraru mena kaore i te tere te rongoa i nga whakaeke, ki te maha ranei nga waahanga nui i te wa roa.

Nga raruraru mo te wa roa

Ka puta pea etahi raruraru haere tonu ki etahi tangata, ina koa ki te kore e pai te whakahaere i to raatau porphyria:

• Te mamae roa e pa ana ki nga mahi o ia ra
• Te kino o te whatukuhu mai i nga whakaeke maha
• Nga raruraru ate, te piki ranei o te mate pukupuku
• Te whara o te io e puta ai te ngoikore, te ngenge ranei
• Te toka kino me te kino mai i te kiri
• Te pouri me te awangawanga mai i te whakahaere i te mate roa

Nga raruraru onge engari kino

I roto i nga keehi tino kino, ina koa ki etahi momo porphyria onge:

• Te anemia kino e hiahia ana ki nga whakawhitinga toto auau
• Nga raruraru o te wheua wheua
• Te piki o te mate pukupuku ate
• Nga kohatu gallstones mai i nga huringa i roto i te hanganga o te bile
• Nga raruraru o te au o te ngakau i te wa o nga whakaeke ohorere

Ko te rongo pai, ma te tautuhi tika me te maimoatanga, ka taea te aukati, te whakahaere ranei i te nuinga o enei raruraru.

Me pehea te aukati i te porphyria?

Ahakoa kaore e taea e koe te aukati i te porphyria i tukuna mai, ka taea e koe te tango i nga kaupae hei whakaiti i to morearea o te whanaketanga o nga tohu, te whakaoho ranei i nga whakaeke. Ko te aukati e arotahi ana ki te karo i nga mea whakaoho e mohiotia ana, me te pupuri i te hauora pai.

Te aukati i te porphyria whiwhi

Mo nga momo kaore i te tino ira, ka taea e koe te whakaiti i to morearea ma te:

• Te whakaiti i te inu waipiro, te kore rānei e inu
• Kaua e whakamahi i te tapeka
• Te whiwhi i te werohanga mo te huaketo B
• Te whakamahi i ngā tikanga haumaru hei karo i te huaketo C me te HIV
• Te whakahaere tika i ngā āhuatanga o te ate
• Te karo i ngā taapiri rino koretake

Te aukati i ngā whakaeke mena kei a koe te porphyria

Mena kua whakamātauhia koe me te porphyria, ka taea e koe te aukati i ngā whakaeke maha mā te:

• Te karo i ngā rongoā e mohiotia ana e whakaoho ana i ngā whakaeke
• Te whakahaere i te ahotea mā ngā tikanga whakahaumaru
• Te kai i ngā kai noa, me te karo i te kai kai nui
• Te whiwhi i te moe pai
• Te whakaiti i te inu waipiro
• Te mahi tahi me tō tākuta i ngā whakakātaitanga o te homoni
• Te tiaki i tō kiri i te rā mena he momo kiri kei a koe

Ngā whakaaro mo te whānau

Mena kei a koe te porphyria, ā, kei te whakamahere koe i tētahi whānau:

• Whakaarohia te tohutohu irahiko hei mārama ki ngā tūponotanga o te whakawhiwhi
• Tōtōhu ki te kaupapa whānau me te tohunga e mohio ana ki te porphyria
• Whakamaherehia te tirotiro i te wa hapu mena he wahine koe
• Whakaarohia te whakamātautau i ngā mema o te whānau kei te tūpono pea

Kia mahara, ehara te mea he tohu kei a koe, kei ō tamariki rānei ka puta ngā tohu. He tokomaha te hunga e ora ana i ō rātou oranga katoa, kāore hoki e mohio ana kei a rātou ēnei huringa irahiko.

Pehea te whakamātautau i te porphyria?

Ka uaua pea te whakamātautau i te porphyria, nā te mea ka rite ngā tohu ki ētahi atu āhuatanga, ā, kāore hoki te nuinga o ngā tākuta e kite pinepine ana. Ko te mea nui ko te ine i ngā porphyrins me ngā mea e pā ana ki roto i tō mimi, i tō toto, i tō paru rānei i te wā o ngā tohu.

Ka tīmata pea tō tākuta mā tō hītori hauora me ō tohu, ka tono rānei i ngā whakamātautau motuhake hei whakau i te whakamātautau.

Te aromatawai tuatahi

Ka ui tō tākuta i ngā pātai taipitopito mō:

• Ōu tohu me te wā e puta mai ai
• Hītori whānau o te porphyria, me ngā tohu rite
• Ngā rongoā e inu ana koe
• Te inu waipiro me ngā āhuatanga o te oranga
• Ngā mea whakaohooho e puta mai ana ngā tohu

Ngā whakamātautau taiwhanga

He maha ngā whakamātautau ka taea te awhina i te whakatau i te porphyria, ā, ko tehea ngā mea e hiahia ana koe e whakaemi ana ki ō tohu:

• Ko te kohikohi mimi 24-hāora - Te ine i ngā porphyrins me ngā wāhanga e pā ana
• Ngā whakamātautau toto - Tirohia ngā porphyrins motuhake i roto i te plasma
• Ngā tauira paru - Rapua ngā momo porphyrins
• Te whakamātautau ira - Tōhua ngā rerekētanga ira motuhake
• Ngā whakamātautau mahi enzyme - Te ine i te pai o te mahi a ngā enzyme motuhake

He mea nui te wā o ēnei whakamātautau. Mō ngā momo koi, ko ngā tauira i kohia i te wā o te whakaeke ka tino kitea ngā hua rerekē atu i ngā tauira i tangohia i te wā e pai ana koe.

Ngā whakamātautau motuhake

I etahi wā ka hiahiatia ngā whakamātautau atu hei whakatau i te momo porphyria kei a koe:

• Te raupapa DNA hei tohu i ngā rerekētanga ira motuhake
• Te whakamātautau mema whānau hei mārama i ngā tauira whatumanawa
• Te whakamātautau anō i ngā wāhanga rerekē o ngā tohu
• Ngā whakamātautau hei whakakore i ētahi atu āhuatanga e puta mai ana ngā tohu rite

Ko te whiwhi i te whakatau tika ka hiahia pinepine ki te mahi tahi me te tohunga e mārama ana ki te porphyria, i te mea ka uaua pea te whakamātautau, me te hiahia kia ata whakamaoritia ngā hua.

He aha te rongoā mō te porphyria?

Ko te rongoā mō te porphyria e aro nui ana ki te whakahaere i ngā tohu, te aukati i ngā whakaeke, me te whakaoti i ngā raruraru ina puta mai. Ko te huarahi motuhake e whakaemi ana ki te momo kei a koe me te kaha o ō tohu.

Te rongoā mō ngā whakaeke koi

Ina pāngia koe e te whakaeke porphyria koi, ko te rongoā e whai ana ki te mutu i te whakaeke me te whakahaere i te mamae:

• Rongotau Hemin - Hoatu ki to tinana te heme e hiahiatia ana kia mutu te whakaeke
• Rongoā Huka - Ka taea e te huka nui te awhina i ngā whakaeke ngawari
• Whakahaumaru mamae - Rongoā mamae kaha hei whakahaere i te mamae o te kopu nui
• Whakahaere ruaki - Rongoā hei mutu i te ruaki me te ngau
• Whakakapi wai - Wai IV hei aukati i te maroke
• Whakahaere toto toto - Rongoā hei whakahaere i te toto toto teitei

Ko te nuinga o ngā whakaeke ohorere e hiahia ana ki te noho whare hauora kia taea ai e ngā tākuta te tirotiro tata atu i a koe me te whakarato i te rongoā kaha.

Rongoā mō te porphyria kiri

Mēnā ko tō porphyria te nuinga o te pānga ki tō kiri, ka arotahi te rongoā ki te tiaki i tō kiri me te whakaiti i ngā taumata porphyrin:

• Phlebotomy - Tango toto auau hei whakaiti i te rino me te porphyrins
• Rongoā antimalarial - Hydroxychloroquine iti hei whakakore i te porphyrins
• Pare ra - Te karo tika i te rā me te whakaatu UV
• Tiaki whara - Te maimoatanga tika o ngā pupuhi kiri me ngā mate
• Whakaiti rino - Te karo i ngā taapiri rino me te whakahaere i te nui o te rino

Ngā rongoā aukati

Mō te hunga he maha ngā whakaeke, ka taea e ngā tākuta te tūtohutia ngā rongoā aukati:

• Ngā whakaurunga hemin auau hei aukati i ngā whakaeke
• Te rongoā whakakore hormone mō ngā wāhine e whakaohotia ana ō rātou whakaeke e ngā huringa marama
• Givosiran (Givlaari) - He rongoā hou ake e whakaiti ana i te auau o ngā whakaeke mō te porphyria waatea ohorere
• Ngā whakarerekētanga oranga hei karo i ngā mea whakaoho e mohiotia ana

Ngā rongoā hou me ngā rongoā e puta mai ana

Kei te haere tonu te rangahau hauora ki te whakawhanake i ngā rongoā hou mō te porphyria:

• Ngā tikanga rongoā-whatu e whakamātauhia ana i ngā whakamātau hauora
• Te whakawhiti ate mō ngā take kino e kore e whakautu ki ētahi atu rongoā
• Ngā rongoā hou e āwhina ana i ngā mahi motuhake i te hanga toto whero
• Te whakawhiti wheua wheua mō ētahi momo onge

Ka whakaritea tō mahere rongoā ki tō momo porphyria motuhake me te āhua o tō pānga ki a koe.

Me pēhea te whakahaere i te porphyria i te kāinga?

Ko te whakahaere i te porphyria i te kāinga ko te karo i ngā mea whakaoho, te mohio ki ngā tohu whakatūpato wawe, me te pupuri i te hauora pai whānui. Mā te huarahi tika, he tokomaha ngā tāngata e ora ana i te ora kī, mahi nui me te porphyria.

Ngā rautaki whakahaere o ia rā

Ka taea e ēnei kaupae te āwhina i a koe ki te noho hauora me te whakaiti i tō tūponotanga ki ngā whakaeke:

• Pupuri i te puka tohu hei whakatau i ō kōrero whakaoho
• Pupuri i ngā wā moe noa, me te whakahaere i te ahotea
• Kai noa, kai rite, ā, karohia te kai whakaiti nui
• Noho makuku, ina koa i te wā o te rangi wera
• Tangohia ngā rongoā kia rite ki te tohu
• Kakahuhia he taonga whakamārama mate e whakaatu ana i tō āhuatanga

Te tiaki i te rā mō ngā momo kiri

Mēnā ka pā tō porphyria ki tō kiri, ka tino nui te tiaki i te rā:

• Whakamahia te sunscreen whānui-whanui me te SPF 30 neke atu rānei
• Kakahuhia ngā ringa roa, ngā tarau roa, me ngā potae whānuitia i waho
• Rapua te atarangi i ngā hāora o te rā nui (10 AM ki te 4 PM)
• Whakaarohia ngā kakahu tiaki UV me ngā kiriata matapihi
• Kia mōhio koe ka taea hoki e ētahi mārama i roto i te whare te whakaoho i ngā tohu

Te whakahaere i ngā tohu whakaeke nui

Mēnā ka kite koe i te tīmatanga o te whakaeke, mahi wawe:

• Whakapa atu ki tō tākuta tonu
• Tāpirihia ngā rongoā ka taea te whakaoho i ngā whakaeke
• Whakaitihia te kai warowaiha mēnā ka tohutohuhia e tō tākuta
• Noho makuku me te okioki
• Kia tū tetahi hei āwhina i a koe ki te tiki rongoā
• Pupurihia ngā korero whakapā āwhina ngāwari te uru atu

Te hanga i tō whatunga tautoko

Ka ngāwari ake te noho tahi me te porphyria ina he tautoko tōu:

• Whakaakohia ngā mema o tō whānau mō tō mate me ngā mea whakaoho
• Hononga atu ki ngā rōpū tautoko porphyria i runga i te ipurangi, i te rohe rānei
• mahi tahi me te rōpū hauora e mohio ana ki te porphyria
• Whakaarohia te tohutohu hei awhina i te whakahaere i te mate roa
• Whakarite i mua mō te haere me ngā āhuatanga ohorere

Kia mahara ko te whakahaere i te porphyria he mahi tahi i waenganui i a koe me tō rōpū hauora. Kaua e whakaroa ki te toro atu ina hiahia koe ki te awhina, ki te patai rānei.

Me pēhea te whakarite mō tō whakatau ki te taakuta?

Ka taea e te whakarite pai mō tō whakatau ki te taakuta te ārahi kia whiwhi koe i te tautuhi tika rawa me te mahere maimoatanga whai hua. Na te mea ka uaua pea te tautuhi i te porphyria, he mea nui ngā korero e homai ana e koe.

I mua i tō whakatau

Kohikohia ēnei korero nui hei whakawhiti atu ki tō taakuta:

• Rāpoi tohu taipitopito tae atu ki ngā rā, ngā mea whakaoho, me te kaha
• Rārangi katoa o ngā rongoā, ngā taapiri, me ngā huaora
• Hītori hauora whānau, ina koa ngā mate kaore i whakamāramatia
• Ngā whakaahua o ngā raruraru kiri mēnā he tohu kiri tōu
• Ngā hua whakamātautau o mua me ngā rēkōta hauora
• Rārangi o ngā pātai e hiahia ana koe ki te ui

Ngā pātai hei ui ki tō taakuta

Whakaarohia te ui i ēnei pātai nui i te wā o tō haerenga:

• He aha te momo porphyria kei ahau, he aha te tikanga o tena?
• He aha ngā mea whakaoho motuhake mōku, me pēhea e karo ai au i ā rātou?
• He aha ngā rongoā me karo ai au?
• Me pēhea te mohio mēnā kei te pāngia ahau e te whakaeke?
• Nōhea au e rapu awhina ohorere?
• Me whakamātautau rānei ngā mema o tōku whānau?
• Me pēhea te pānga o tēnei ki tōku oranga o ia rā me ngā mahere mō te heke mai?

Ngā mea hei tatari i te wā o te whakatau

Ka tino:

• Tangohia te hītori hauora taipitopito
• Whakahaerehia te whakamātautau tinana
• Whakahaua etahi whakamātautau toto, mimi, rānei paru motuhake
• Tākupu i ngā kōwhiringa maimoatanga e whakaū ana ki ō tohu
• Hoatu ki a koe ngā rārangi karo i ngā mea whakaohooho
• Whakaritea ngā whakatau whai muri mō te tirotiro

Kaua e wehi ki te ui atu mō te whakamārama mena kaore koe e mōhio ki tetahi mea. He uaua pea te porphyria, ā, he mea nui kia pai tō ngākau ki tō mahere maimoatanga.

He aha te mea nui mō te porphyria?

Ko te porphyria tētahi rōpū o ngā āhuatanga onge engari ka taea te whakahaere e pā ana ki te hanga o te heme e tō tinana, he wāhanga nui o ngā pū toto whero. Ahakoa ka taea e ia te whakaohooho i ngā tohu kino, ka taea e te nuinga o te hunga e pangia ana e te porphyria te noho i ngā oranga noa, hauora me te whakatau tika me te maimoatanga.

Ko ngā mea tino nui hei mahara ko te whakatau whakamutunga ka puta he rerekētanga nui, ka taea te aukati i ngā tohu mā te karo i ngā mea whakaohooho, ā, he maimoatanga whai hua kei te wātea mō ngā whakaeke ohorere me te whakahaere tonu.

Mena kei te whakaaro koe kei a koe pea te porphyria, ina koa ki te whai koe i ngā tohu hoki kore i whakamāramatia, i te hītori whānau rānei o te āhuatanga, kaua e whakaroa ki te kōrero ki tō tākuta. Mā te rōpū hauora tika me te huarahi whakahaere, ka taea e koe te whakahaere i tō āhuatanga me te pupuri i te kounga ora pai.

Kia mahara kei te whakatau koe e te porphyria. He tokomaha ngā tāngata e pangia ana e tēnei āhuatanga e mahi ana, e haereere ana, e whānau ana, ā, e whai ana i ō rātou moemoeā pēnei i tetahi atu. Ko te matua ko te mārama ki tō āhuatanga, te mahi tahi me ngā kaiwhakarato hauora mohio, me te tango i te wāhi kaha ki te whakahaere i tō hauora.

Ngā pātai e ui pinepinetia ana mō te porphyria

U1: He mate pāhoko te porphyria?

Kāo, ehara te porihiria i te mate ka taea te hora. E kore e taea te hopu mai i tetahi atu, te hora atu rānei ki ētahi atu. Ko te nuinga o ngā momo he āhuatanga ira e whiwhi ana koe i ngā mātua, ā, ko ētahi ka puta mai i ngā raruraru ate, i ētahi atu take hauora rānei. Ka pā te āhuatanga ki te hanga heme o tō tinana, he tukanga o roto tēnā, kāo he kaihoko mate.

P2: Ka taea te whakaora i te porihiria?

I tēnei wā, kāo he rongoā mō te porihiria, engari ka taea te whakahaere pai rawa atu me te rongoā tika. He tokomaha ngā tāngata whai porihiria e ora ana i ngā oranga noa mā te karo i ngā mea whakaoho me te whai i ō rātou mahere rongoā. Kei te mahi ngā kairangahau i ngā rongoā hou, tae atu ki te rongoā ira, ka āhei pea te tuku i ngā kōwhiringa pai ake i te wā kei te heke mai. Ko te āta whakaaro kei te aukati i ngā whakaeke me te whakahaere i ngā tohu ina puta.

P3: Kia pehea te noa o te porihiria?

He tino onge te porihiria, e pā ana ki te 1 i roto i te 25,000 o te iwi katoa. Heoi, he rerekē te auau i runga i te momo me te wāhi whenua. Ko te porihiria cutanea tarda te momo tino noa, ā, ko ētahi momo penei i te porihiria erythropoietic whānau he tino onge. Ko ētahi momo he tino noa i roto i ngā taupori motuhake na te mea he āhuatanga ira.

P4: Ka taea e ngā wāhine whai porihiria te whānau tamariki me te ora?

He tokomaha ngā wāhine whai porihiria ka taea te whānau tamariki hauora, engari e hiahia ana ki te whakamahere me te tirotiro ata me ngā kaiwhakarato hauora e whai wheako ana ki te whakahaere i te porihiria i te wā hapu. Ka taea e ngā huringa homoni i te wā hapu te whakaoho i ngā whakaeke i ētahi wāhine, na reira he mea nui te tirotiro hauora tata. Ka taea e te tohutohu ira te āwhina i a koe ki te mārama ki ngā tūponotanga o te tuku i te āhuatanga ki ō tamariki me te whakatau i ngā whakatau whānau whakaaro.

P5: Me aha ahau mēnā kei te whakaaro ahau kei te puta tētahi whakaeke porihiria?

Mēnā kei te whakaaro koe kei te pāngia koe e te whakaeke porphyria, kōrero atu ki tō tākuta tonu, ki te haere rānei ki te rūma urupare mō te āwhina tere, ki te kino rawa ngā tohu. Kaua e tatari kia kite mena ka pai ake ngā tohu. Whakamutu i te inu i ngā rongoā e āhei ana te whakaoho i ngā whakaeke, kia makuku tonu, ā, kia tūpono tetahi hei āwhina i a koe ki te tiki i te tiaki hauora. Ko te rongoā wawe o ngā whakaeke ka ārahi ki ngā hua pai ake, ā, ka taea te aukati i ngā raruraru kino.