He rite te toto e rere ana i roto i ō tātou uaua ki te awa whakaora, kāore? Kei roto i ngā toto whero o tēnei toto te hāora e hiahiatia ana e ngā pūtau katoa o tō tātou tinana. Whakaarohia te aha ka tupu mēnā ka pakaru ohorere ēnei toto whero tino nui, ā, ka whakangaromia mō te kore take? He tino whakamataku. I tēnei rā ka kōrero tātou mō tētahi mate toto tino onge, engari he tino nui, me mōhio tātou katoa. Ko te ingoa o tēnei ko te Paroxysmal Nocturnal Hemoglobinuria, ko
te PNH rānei te poto.
He aha te PNH?
He mate toto tino onge te PNH. I tēnei wā
, ka whakangaromia ngā toto whero i roto i ō tātou toto, kāore he take. Hei whakamārama, ka whakangaromia ēnei toto whero e tō tātou ake
pūnaha ārai mate . Nā te mea kāore he momo pūmua motuhake o ngā toto whero o te hunga whai mate nei hei tiaki i a rātou. Nō reira, kāore e taea e te pūnaha ārai mate o tō tātou tinana te mōhio ki a rātou ko 'ō tātou ake pūtau'. Ina whakangaromia teretia ngā toto whero i tēnei ara, kāore e taea e tō tātou hinu wheua te hanga toto whero hou i te tere kotahi. Kātahi ka heke te toto i roto i te tinana. Ka kiia tēnei āhuatanga ko
te anemia . Waihoki, ko tētahi atu āhuatanga kino o tēnei mate ko
te whakanui ake i te mōrearea o ngā toto toto i roto i ngā oko toto. Kāore te mate PNH e pā ki te katoa i te ara kotahi. He tino ngawari ngā tohu o ētahi tāngata. Ka taea e rātou te noho noa i te oranga. Engari mō ētahi, ka kaha ake te mate. Me haere tonu pea rātou ki te tango rongoā me te whakawhiti toto.
He aha ngā take o te mate PNH?
Ko te mea nui i konei,
ehara te PNH i te mate whānau. Arā, kāore e tukuna mai i te whaea ki te tamaiti. Ā, ehara i te mate hopuhopu. He mate tino onge. Whakaarohia, i tētahi whenua pērā i Amerika, ina tata ki te 1.8 miriona ngā tūroro mate pukupuku hou e kitea ana i ia tau, 400 ki te 500 noa iho ngā tūroro PNH e kitea ana. Ko tēnei mate ka puta mai i te whakarerekētanga ira i roto i te ira e kiia nei ko te `PIGA` i roto i ngā pūtau take i roto i tō tātou hinu wheua. He kupu ngāwari, he hapa iti kei roto i ngā 'tohutohu' e whiwhihia ana e te hinu wheua, arā, te wheketere e hanga ana i ngā toto whero. Nā tēnei hapa, kāore ngā toto whero e hangaia ana e whiwhi i taua paninga pūmua tiaki.
Kāore anō kia taea e ngā tākuta te mārama he aha i rerekē ai tēnei ira 'PIGA', he aha rānei ko ētahi anake o te iwi ka puta ai ēnei toto toto whero rerekē.
Kei a koe anō ēnei tohu?
Ina pakaru ngā pūtau toto whero, ka tukuna te tae whero e kiia nei ko te hemoglobin i roto i a rātou ki roto i te toto. Ka tangohia ēnei para mai i te tinana mā roto i ngā whatukuhu i roto i te mimi. Nō reira, ka puta te tae o te mimi
he whero, he parauri, he pouri ake rānei i te mea noa . Heoi, ehara i te mea he rerekē te tae o te mimi o te katoa e pāngia ana e te PNH. Ko te haurua anake o ngā tūroro ka pāngia e tēnei tohu. Ā, he tino pouri te mimi e tukuna ana i te pō, i te wā rānei e ara ake ai i te ata. Haunga tēnei tohu matua, tera pea ētahi atu tohu. Kia titiro tātou he aha ēnei.
| Tohu | He whakamārama māmā |
|---|
| Ngenge auau | Nā te mea he iti ake ngā toto whero e kawe ana i te hāora ki te tinana, ka tino ngenge koe ahakoa te mahi iti nei. E ahua kore ora ana tō tinana. |
| Te poto o te manawa | Ka pōuri koe ina hikoi pakupaku koe, ina piki rānei i ngā arawhata. Ko te take o tēnei, kāore tō tinana e whiwhi ana i te nui o te hāora e hiahiatia ana. |
| Ngāwari te maru me te toto | He kikorangi noa iho ngā ira e puta ana i te tinana. Ahakoa he patunga iti, ka roa te wā e mutu ai te toto. |
| Ngā mamae o te upoko | Ka pā mai pea ngā mamae o te upoko, inā koa nā ngā huringa o te toto. |
| Te toto totoka (Thrombosis) | Koinei te raruraru tino morearea. Ka taea e ngā toto toto te hanga i roto i ngā uaua o ngā waewae, te puku, te roro rānei. |
| Ngā ira whero i raro i te kiri | Ko ngā ira whero iti e puta ana i te mata o te kiri, tērā pea nā ngā toto iti i raro i te kiri i puta ai. |
| Te ngoikore o te moepuku i roto i ngā tāne | I ngā wā tino kino o te mate, ka uaua pea te tuku i te wai i roto i ngā tāne nā te pānga ki te rere o te toto. |
Ko wai te mea tino tūpono ka pāngia e tēnei mate?
E ai ki ngā tākuta, he paku teitei ake te mōrearea o te whakawhanake i te PNH mō ētahi tāngata.
- Mō te hunga ngoikore te hinu wheua : Mēnā he take kua ngoikore te mahi a te hinu wheua.
- Mō te hunga whai mate e kiia nei ko te Aplastic Anemia : He mate anō hoki tēnei e pā ana ki te hinu wheua. Ko te hunga whai mate nei ka tūpono ki te whakawhanake i te PNH i muri mai.
- Mō te hunga uri Āhia: He nui ake te kitea o tēnei mate i roto i te hunga Āhia i ērā atu iwi.
Ko te PNH ka kitea i roto i
ngā pakeke kei roto i ō rātou tau 30 , engari ka taea hoki te pā ki te hunga rangatahi, tae atu ki ngā tamariki nohinohi me ngā pēpi.
Me pēhea te tautuhi i te mate?
Nā te mea he mate onge te PNH, ā, he rite tonu
ōna tohu ki ērā o ētahi atu mate, ka roa pea te wā ki te tautuhi i te mate. Ina koa mō te tangata kāore e rerekē te tae o te mimi, ki te kore te tākuta e whakaaro he aha tēnei, ka roa pea te tautuhi. Hei tautuhi i te mate, ka pātai tuatahi tō tākuta ki a koe mō ō tohu me tō hītori hauora. Kātahi ka tonoa e ia ētahi whakamātautau toto. O ēnei,
ko te whakamātautau pai rawa atu me te tika rawa atu hei whakaū i te PNH ko te whakamātautau toto motuhake e kiia nei ko te 'Flow Cytometry'. Ka taea e tēnei whakamātautau te ine tika i te maha o ngā toto whero e ngaro ana i taua pūmua tiaki i roto i ō toto.
He aha ngā maimoatanga mō te PNH?
Waimarie, he maha ngā maimoatanga whai hua hei whakahaere i te PNH. Ma tō tākuta e aromatawai tō āhua, ā, ka whakatau i te maimoatanga e pai ana mōu.
- Ngā rongoā ārai mate: Ka mahi ngā rongoā pēnei i te eculizumab (Soliris) me te ravulizumab ( Ultomiris ) mā te aukati i te whakangaromanga o ngā toto whero e tō tātou pūnaha ārai mate. Ka whakaitihia hoki e ēnei te tūponotanga o te toto totoka.
- Ngā steroids: Ka whakamahia ēnei i ētahi wā hei whakahaere i te whakangaromanga o ngā pūtau toto whero.
- Ngā rongoā whakaheke toto:Ka hoatu ēnei hei whakaiti i te mōrearea o te toto totoka.
- Ngā whakawhiti toto: Ina iti rawa te maha o ngā toto o te tinana, ka tukuna te toto ki waho hei whakanui ake i te maha o ngā toto whero.
Hei tāpiritanga, kei reira ngā maimoatanga hei āwhina i te tinana ki te whakaputa i ngā toto toto whero ake i roto.
- Ngā huaora pērā i te waikawa folic
- Tauwehenga tipu tangata
- Androgen, te homoni tāne
Ka taea e te whakawhitinga wheua te whakaora katoa i te PNH. Heoi, nā te mea he pokanga tino mōrearea, he uaua hoki, ka tūtohu noa ngā tākuta mēnā kāore i angitu ngā maimoatanga katoa.
Karere Tangohia ki te Kāinga
- Ehara te PNH i te mate whānau mai, ehara hoki i te mate hopuhopu. He mate toto tino onge tēnei e puta mai ana i te panoni o te ira i roto i te hinu wheua.
- Ko ngā tohu matua ko te mimi pouri nā te pakaru o ngā toto whero, te ngenge nui, te poto o te manawa , me te mōrearea o te toto totoka.
- Ki te mau tonu ēnei tohu ki a koe, kaua e mataku, engari me toro atu ki tētahi tākuta whai tohu i te wā e taea ai. Me kōrero atu ki tō tākuta mō tēnei.
- Ka taea te tautuhi tika i te mate mā te whakamātautau toto motuhake e kiia nei ko
Flow Cytometry . - He tino whai hua ngā maimoatanga ināianei hei whakahaere i te mate me te ārai i ngā raruraru, nō reira he mea tino nui te whai i ngā tohutohu hauora tika.
PNH Sinhala, Hemoglobinuria pō paroxysmal, ngā mate toto, te pakaru o ngā toto whero, te mimi pouri, ngā mate hinu wheua, te anemia
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