Ina pāngia koe e te patunga iti, ka mutu te toto i muri i tētahi wā, tika? Nā te mea he pūnaha parepare whakamiharo i roto i tō tātou tinana tēnā. Engari mō ētahi tāngata, kāore tēnei tukanga toto e tupu tika. Ahakoa he patunga iti ka taea te whakaputa toto tonu. I tēnei rā kei te kōrero tātou mō te hemophilia, he mate tuku iho e kore ai e pai te toto.
Me pēhea taku mōhio mēnā he hemophilia tōku?
Ki te kī ngāwari, ina tīmata te toto o ō tātou tinana, ka tīmata he mekameka o ngā tauhohenga matū ki te aukati. Ko te mutunga iho o tēnei ko te hanganga o te toto totoka (Fibrin clot). He maha ngā pūmua motuhake i roto i ō tātou toto e āwhina ana ki te hanga i tēnei toto totoka. Ka kiia ēnei e tātou ko ngā "pūtake totoka" ko ngā Pūtake Totoka rānei.
Ko te hemophilia he mate tuku iho e ngaro ana, e iti iho ana rānei te rahinga o tētahi o ngā take toto totoka, arā, ko te Take VIII , ko te Take IX rānei. Ko te tikanga tēnei kāore te toto e totoka noa.
Ki te whakapae te tākuta he hemophilia tōu, ka tukuna e rātou ētahi whakamātautau toto hei tirotiro i te pai o te toto e pupū ana. Kei roto i ēnei whakamātautau:
- Ka tangohia he tauira o tō toto, ka konatunatua ki ngā matū motuhake i roto i te taiwhanga, kātahi ka whakamatautauria kia kitea ai mēnā ka puta he toto totoka, ā, mēnā koinā, te tere o tōna hanganga.
- Mena he rerekē ēnei whakamātautau, ka whakahaerehia he whakamātautau toto motuhake ake hei ine i ngā taumata o te Tauwehe VIII me te Tauwehe IX i roto i ō toto.
Mā ēnei whakamātautau ka āwhina tō tākuta ki te whakatau ko tēhea momo hemophilia tōu (A, B rānei) me tōna kaha.
He aha ngā maimoatanga mō te hemophilia?
He maha ngā maimoatanga mō te hemophilia. Ko te momo maimoatanga e hiahiatia ana e koe ka whakawhirinaki ki te momo hemophilia kei a koe me tōna kaha.
Hei tauira, ki te mea he hemophilia ngawari tōu, me rongoā noa pea koe ina whara koe, ina whakarite rānei koe mō te pokanga. Heoi, ki te mea he hemophilia kino tōu, ā, he maha tonu te toto, me rongoā tonu pea koe hei ārai i te toto me te tiaki i ō hononga mai i te hē me te hauātanga.
Ko ngā tikanga maimoatanga matua ko ēnei e whai ake nei:
| Tikanga maimoatanga | He whakamārama māmā |
|---|---|
| Te hoatu i ngā matū toto totoka (Te Whakaora Whakakapinga o ngā matū totoka) | Ko te rongoā matua ko te hoatu i te toto toto e ngaro ana, e iti ana rānei (Tauwehe VIII, IX rānei) mā roto i te uaua (ā-uaua). |
| Ētahi atu momo rongoā | Te hoatu i ētahi atu rongoā hei āwhina i te whakahaere i te toto, ahakoa me ngā matū whakapakeke toto, kāore rānei. |
| Te rongoā i ngā hononga toto me ētahi atu raruraru | Te whakahaere i te kino o ngā hononga nā te toto auau, te whakaora tinana, me ngā huringa momo noho. |
Kia tirohia ake ngā rongoā motuhake e whakamahia ana.
Ka hoatu he matū VIII ki te hunga he hemophilia A, ā, ka hoatu he matū IX ki te hunga he hemophilia B. E rua ngā huarahi matua e hangaia ai ēnei matū:
1. Te toto toto i kohaina
2. I ahu mai i te DNA Hanga/Whakahou
Kua hangaia ngā momo matū hou ake kia roa ake te noho ki roto i te tinana, arā, he iti ake ngā werohanga e hiahiatia ana i tērā o mua.
| Ingoa o te rongoā | Te whakamahinga me te mahi |
|---|---|
| Emicizumab-kxwh (HEMLIBRA) | He rongoā e hoatu ana hei ārai, hei whakaiti rānei i te toto i roto i te hunga e pangia ana e te hemophilia A. Ka mahi mā te whakakapi i te factor VIII e ngaro ana i tētahi atu huarahi. Ka hoatu hei werohanga kiri i raro i te kiri kotahi i te wiki. |
| Desmopressin (DDAVP) | He rongoā e hoatu ana ki te hunga he hemophilia A ngāwari. Ka whakanui ake i te kukū o te factor VIII i roto i te toto mō te wā poto. Ka taea te hoatu mā te uaua, mā te werohanga, mā te rehu ihu rānei. |
| Ngā rongoā ārai-fibrinolytic (hei tauira, te waikawa Tranexamic) | He rongoā ēnei ka taea te tango hei pire. Mā te mahi ka ārai i te tere o te memeha o te toto totoka. I ētahi wā, ka whakamahia ngātahi me te rongoā ā-ira. |
| Ōbizur | He momo matū VIII tēnei e whiwhihia ana mai i ngā poaka. Kāore e whakamahia hei rongoā i te hemophilia tuku iho, engari hei rongoā i tētahi mate onge, ā muri ake nei e kiia nei ko te Acquired Haemophilia A. Ka puta pea tēnei mate i te hāputanga, te mate pukupuku, ētahi rongoā rānei. |
Ētahi atu take me te whakahaere
Me aro atu hoki tātou ki ētahi atu raruraru e pā mai ana me te hemophilia.
Ngā hononga toto
Koinei te raruraru tino kino o te hemophilia. Mēnā ka puta te toto i roto i ngā hononga pēnei i te turi, te tuke, te pona rānei, he mea nui kia whiwhi tonu i te rongoā āwhina. Ki te kore tēnei e mahia, ka pakaru tonu te hononga, ka mamae, ka pupuhi, ka uaua hoki te neke haere i roto i te wā. Mēnā ka puta te toto, okioki, ka pania te hononga ki te hukapapa e ai ki ngā tohutohu a tō tākuta. Kia mutu te mamae me te pupuhi, he mea tino nui te whakaora tinana hei whakahoki mai i te nekehanga me te kaha o te hononga.
Ngā mahi ā-tinana
Ahakoa he hemophilia koe, ehara i te mea me noho tonu koe ki te kāinga. Heoi, he mea whakaaro nui kia matara atu i ngā hākinakina pā ka whara pea. Hei tauira, kāore e tika ana ngā hākinakina pēnei i te whutupōro me te mekemeke. Heoi, he tino pai ngā mahi whakakori tinana pēnei i te kauhoe, te hikoi, me te eke pahikara (i runga i te huarahi haumaru) mō te tinana. He pai ake te kōrero ki tō tākuta mō ngā mahi whakakori tinana e tika ana māu me ngā mea kāore e tika kia mahia e koe.
He aha ngā raruraru ka pā mai i te wā e rongoatia ana?
Ahakoa he tino haumaru ngā maimoatanga o nāianei, e rua ngā raruraru hei tūpato māu.
1. Ngā Mate Toto: I ngā tau o mua, i ngā tau 1970 me 1980, he nui te mōrearea o te tuku i ngā huaketo pēnei i te HIV me te hepatitis mā te rongoā toto-based factor. Engari ināianei kāore he take e manukanuka ai mō tēnā.I ēnei rā, ka tirotirohia rawatia ngā kaituku toto. Ka whakamātauhia ngā toto katoa mō ngā huaketo, kātahi ka rongoatia ki ngā tukanga motuhake hei whakakore i a rātou i mua i te whakamahinga ki te rongoā. Nō reira, he tino iti te mōrearea inaianei. Heoi, hei tangata hemophilia, he mea tino nui kia werohia kia ārai i te mate hepatitis A me te B.
2. Ngā panonitanga o te pūnaha ārai mate (Ngā aukati): I ētahi wā, ka pohehe te pūnaha ārai mate o te tinana i te pūmua tauwehe e tukuna ana e tātou mai i waho hei 'hoariri' ka tīmata te whakaeke i a ia. Ka kiia tēnei ko te hanganga o ngā aukati . Kātahi ka kore e mahi tika te rongoā tauwehe e tukuna ana e tātou. He ahua uaua tēnei. Koia te take ka whakamātautau auau tō tākuta i ō toto (o tō tamaiti rānei) kia kite ai mēnā ka puta tēnei momo tauhohenga.
Karere Tangohia ki te Kāinga
- He mate toto toto tuku iho te hemophilia. Ko ngā momo matua e rua ko te hemophilia A (te korenga o te āhuatanga VIII) me te hemophilia B (te korenga o te āhuatanga IX).
- Ka kitea te mate mā te whakamahi i ngā whakamātautau toto motuhake.
- Ko te maimoatanga matua he hoatu ki te tinana he matū toto e ngaro ana, e iti ana rānei mā roto i te uaua.
- He tino haumaru, he tino whai hua hoki ngā maimoatanga e whakamahia ana i ēnei rā. Kua ngaro kē ngā tūponotanga o mua.
- Mena ka puta te toto i roto i te hononga, he mea nui kia rapu awhina hauora tonu. Ka āwhina tēnei ki te ārai i te kino tuturu o te hononga.
- Me kōrero tonu ki tō tākuta mō te momo noho me te tikanga whakakori tinana e tika ana māu. He mea tino nui kia whai i ngā tohutohu a tō tākuta.
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