Mena he hemophilia tōu, e mōhio ana pea koe ki te whakarihariha me te whakamataku o te toto tonu, i ētahi wā kāore he take, ā, he uaua ki te aukati i
te toto mai i ngā motu iti rawa. Tērā pea kei te tango rongoā koe hei rongoā i tō toto, kei te tango rongoā rānei koe hei ārai. Heoi, i te whanaketanga o te pūtaiao hauora, he maha ngā maimoatanga hou, whai hua mō tēnei mate. Nō reira, i tēnei rā, me kōrero tātou mō tētahi rongoā hou, rerekē. Ko Qfitlia (fitusiran) tōna ingoa.
Tuatahi, kia titiro tātou, he aha te take kāore e mutu ai te toto i roto i te hemophilia?
Hei whakarāpopototanga, he pūmua motuhake kei reira hei āwhina i te toto kia totoka. Ka kiia ēnei he
" pūmua totoka ". Pērā i te moata e hiahiatia ana hei pupuri i ngā pereki i te wā e hanga ana i tētahi pakitara, he mea nui ēnei pūmua totoka hei aukati i te toto. Ko te tangata he hemophilia kāore i te whai i tētahi o ēnei pūmua totoka.
- Kāore i te hunga whai hemophilia A tētahi matū e kiia nei ko te Factor VIII.
- Kāore i te hunga whai hemophilia B tētahi matū e kiia nei ko te Factor IX.
Ina heke iho ēnei āhuatanga, ka heke te hanga o tētahi atu taahiraa nui i roto i te tukanga toto totoka, e kiia nei ko
te thrombin . Ko te thrombin te āhuatanga matua e hanga ana i te toto totoka, ā, e mutu ai te toto. Nō reira, ina heke te thrombin, ka uaua te whakamutu i te toto ina puta. Kei te mārama koe? Ko te tikanga, ko tā tātou mahi hei maimoatanga mō te wā roa ko te hanga horihori i te āhuatanga totoka (āhua 8, 9 rānei) e ngaro ana i roto i tō tinana, ka hoatu hei
werohanga ki roto i te uaua. Engari he rerekē te mahi a te rongoā Qfitlia e kōrerohia ana e tātou i tēnei rā.
Nā, he aha te ingoa o tēnei rongoā hou ko Qfitlia (fitusiran)?
He rongoā tēnei e mahi ana i tētahi āhua tino rerekē. I kōrero tātou i mua ake nei mō te meka e hiahia ana te toto ki tētahi mea e kiia nei ko te thrombin hei totoka. I roto i ō tātou tinana, kei reira tētahi atu pūmua e whakahaere ana i te hanga o tēnei thrombin, arā, ka aukati i te hanga o ētahi atu thrombin. E kiia ana ko
te antithrombin .Whakaarohia pēnei. Kei roto i tō tinana he matū toto totoka (thrombin) e āwhina ana i tō toto kia totoka. Engari kei reira tētahi atu matū (antithrombin) e whakahaere ana, e aukati ana hoki i tana mahi. I roto i te hemophilia, he iti te hanga o te matū e āwhina ana (thrombin) i te tīmatanga. Nō reira, ina mahi noa te matū e aukati ana (antithrombin), ka heke haere te toto totoka. Ko tā Qfitlia e mahi ana ko
te whakaiti i te nui o te antithrombin e aukati ana i a ia. Kātahi ka tukuna te nui o te thrombin e hangaia ana e tō tinana kia mahi tika me te kore e aukatia. Ko te tikanga o tēnei ka whakamahia e ia te pūnaha o te tinana hei whakatenatena i te toto totoka, kaua ki te hoatu ki a koe te matū totoka kua ngaro i a koe. Koinei te rongoā whakaiti-antithrombin tuatahi e whakamahia ana hei rongoā i te hemophilia.
Me whakamārama anō tātou i te rerekētanga i waenga i ēnei tikanga maimoatanga e rua.
Ka taea e koe te mārama ki tēnei rerekētanga mai i te ripanga i raro nei.
| Āhuatanga | Te rongoā tuku iho (Te Whakakapinga Tauwehe) | Te maimoatanga Qfitlia (fitusiran) |
|---|
| Mahi | Ko te matū toto totoka e ngaro ana i te tinana ka hoatu ki waho. | Ka whakaitihia te antithrombin, e ārai ana i te toto totoka, ā, ka taea e te tinana te whakamahi i te nui ake o ana ake thrombin. |
| Me pēhea te hoatu | He maha ngā wā mā roto i te uaua. | I raro i te kiri (i raro i te kiri). |
| Auautanga | Tērā pea e tika ana kia maha ngā wā i te wiki. | Kotahi i te marama, i ia rua marama rānei (6-12 ngā wā i te tau). |
| Mō te hunga whai aukati | Kāore e whai hua te rongoā ā-ira noa, ā, e hiahiatia ana ētahi atu maimoatanga motuhake (ngā rongoā ārai mate). | Ka taea hoki te whakamahi angitu i tēnei maimoatanga mō te hunga whai aukati (ngā paturopi hei ārai i ngā āhuatanga). |
He pai tēnei rongoā mōku, ā, me pēhea taku whakamahi?
Mena kei a koe te hemophilia A, B rānei, ā, neke atu i te 12 tau te pakeke, ka whakaarohia pea e tō
tākuta mēnā he tika tēnei rongoā māu. Ko te mea nui ko te taea hoki te whakamahi i roto i te hunga kua whakawhanake i ngā aukati (ātete) ki te rongoā take o mua. Heoi, i mua i te tīmatanga o tēnei maimoatanga, ka whakahaerehia e tō tākuta ētahi
whakamātautau toto . 1.
Taumata Antithrombin: Ka ine tēnei i te nui o te antithrombin i roto i ō toto. Ka whakatauhia te horopeta o Qfitlia i runga i tēnei uara. 2.
Mahi ate: Ka aroturukitia tō ate i mua atu, i te wā hoki o te maimoatanga. Ka hoatu tēnei rongoā
hei werohanga i raro i te kiri (i raro i te kiri). Ko te tikanga kāore e hoatu ki roto i te uaua. Ka taea e koe, e tō kaitiaki rānei te hoatu ki a koe i te kāinga i muri i te whakangungu. Ka hoatu ki te kiri o te puku, te huha, te tuara rānei o te ringa o runga. Me karo koe i ngā wāhi he marō, he motu rānei. Mena kei te tango kē koe i ētahi atu maimoatanga hemophilia, me mutu pea koe, me whakarerekē rānei i aua maimoatanga i muri i te tīmatanga o Qfitlia. Ma tō
tākuta tēnei e whakamārama mārama ki a koe.
Kaua rawa e mutu te tango i ō rongoā o nāianei, kaua hoki e mutu te tango i a Qfitlia me te kore he tohutohu a tō tākuta. Mā te mahi pēnā ka piki ake pea tō tūponotanga ki te toto.
Me mōhio anō hoki tātou ki ngā pānga taha? Me pēhea tātou e ārai ai i a rātou?
Pērā i ngā rongoā katoa, ka pā mai ētahi pānga taha ki a Qfitlia. He mea nui kia mōhio koe ki ēnei pānga, kia mahi hoki i ngā mahi hei ārai i ēnei pānga.
- Ngā Puku Toto : Nā te mea ka whakatairangahia e tēnei rongoā te pupuhi toto, he tino onge te puta o ngā pupuhi toto kāore e hiahiatia i roto i ngā uaua. Mā tō tākuta e whakatau te horopeta tika mō tō taumata antithrombin hei whakaiti i tēnei mōrearea.
He mea tino nui te whai i ngā whakamātautau toto auau e ai ki tā tō tākuta. Ko ngā taumata antithrombin ka tirohia i te tuatahi, tuatoru, tuarima, me te ono o ngā marama o te maimoatanga. Koinei te huarahi e taea ai te whakatau i te horopeta rongoā tika māu, me pēhea hoki te whakaiti i tēnei mōrearea.
- Ngā whākōkī ate teitei: Tērā pea he nui ake ngā whākōkī ate o ētahi tāngata. Koia te take e aroturukihia ai e ngā tākuta te āhua o te ate mā te whakamātautau toto .
- Te Kōhatu Puku me te Mumura o te Pūngāwerewere: Ki te pāngia koe e ngā tohu pēnei i te mamae nui o te puku, te whakapairuaki, me te ruaki , me whakamōhio tonu atu ki tō tākuta.
- Ngā Mate Pukupuku: He iti noa te tūponotanga o te mate i te wāhi i werohia ai. Nō reira, he mea nui kia werohia kia ma tonu, kia rite ki ngā tohutohu a tō tākuta. He mea nui anō hoki ngā tikanga akuaku pai, pērā i te horoi ringa i ngā wā katoa.
Kua whakaatuhia e ngā rangahau he iti ake ngā wā toto i pā ki te hunga hemophilia (arā, te hunga whai aukati me te hunga kāore he aukati) i tango i te Qfitlia i te hunga kāore i tango i tētahi maimoatanga ārai. Waihoki, he iti ake ngā wā toto i pā ki te hunga whai aukati i huri mai i ētahi atu maimoatanga ki te Qfitlia. Engari kia maumahara ka rerekē pea ēnei hua i ia tangata, i ia tangata.
Karere Tangohia ki te Kāinga
- He maimoatanga hou a Qfitlia (fitusiran) mō te hemophilia A me te B, he rerekē te mahi.
- Ka mahi tēnei mā te whakaiti i te nui o te antithrombin, e ārai ana i te toto totoka, kaua e hoatu ki waho te iti o te tauwehe totoka o te tinana.
- He werohanga tēnei rongoā i raro i te kiri, ehara i te mea ki roto i te uaua, ā, he maha ngā wā ka hoatu, pērā i te kotahi i te marama, i ia rua marama rānei.
- Mā tō tākuta e whakatau mēnā he tika tēnei maimoatanga māu i muri i ētahi whakamātautau toto.
- Hei karo i ngā pānga taha, he mea nui kia whakamātauria te toto (ina koa ko te antithrombin me te mahi ate) i ngā wā katoa e ai ki te whakahau a tō tākuta.
- Kaua e whakamutua te maimoatanga Qfitlia me te kore he tohutohu hauora mō tetahi take.
Hemophilia, Hemophilia, Qfitlia, fitosiran, toto totoka, toto, tauwehe totoka, antithrombin, maimoatanga hemophilia, rongoā hou, pānga taha
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