Ina pāngia koe e te motu iti, ka mutu te toto i muri i tētahi wā, tika? Nā te mea he tikanga whakamiharo kei roto i tō tātou tinana tēnei. Engari mō ētahi tāngata, kāore e taea e te toto te aukati i tēnei. Ahakoa he motu iti ka taea te haere tonu o te toto. I tēnei rā, ka kōrero tātou mō tētahi mate e kiia nei ko te hemophilia, he mate kua rongohia e te tini o te tangata engari kāore i te tino mōhio. I mua i tō tātou mataku, me mārama tātou he aha tonu.
Me pēhea koe e mōhio ai mēnā he hemophilia tōu?
Hei whakarāpopototanga, i ngā wāhi katoa e toto ana te tinana, ka puta he mea pērā i te 'mono' hei aukati i te toto. Ka kiia tēnei he toto totoka fibrin. Hei hanga i tēnei toto totoka, me mahi tahi ngā pūmua motuhake o roto i ō tātou toto. Koinei ngā mea e kiia nei e tātou ko ngā "pūtake totoka".
Ko te hemophilia he āhuatanga e ngaro ana, e iti iho ana rānei tētahi o ēnei matū toto totoka, arā, te matū VIII, te matū IX rānei, mai i te whānautanga. Kātahi ka kore e tika te hanganga o te toto totoka, ā, ka haere tonu te toto me te kore e mutu.
Ki te whakapae tō tākuta kei a koe tēnei mate, ka whakahaerehia e rātou ētahi whakamātautau ki ō toto.
- Te taahiraa tuatahi: Ka tangohia he tauira o tō toto, ā, ka whakamātauhia e te taiwhanga te roa o te wā e totoka ai.
- Hipanga 2: Mena ka whakaatuhia he rerekētanga i roto i aua whakamātautau, ka mahia ētahi atu whakamātautau motuhake hei tirotiro i te nui o te matū VIII me te matū IX kei roto i ō toto.
Ka taea e ēnei whakamātautau te āwhina i tō tākuta ki te whakatau tika i te momo hemophilia kei a koe (Hemophilia A, B rānei), me tōna kaha hoki.
He aha ngā maimoatanga mō te hemophilia?
Ka rerekē te maimoatanga mō te hemophilia i runga i te momo me te kaha o te mate kei a koe. Hei tauira, ki te mea he hemophilia ngawari tōu, tera pea ka hiahiatia he maimoatanga i muri i te whara, i mua rānei i te pokanga.
Heoi, ki te mea he nui te hemophilia kei a koe, arā, he maha tonu ō toto e totohu ana, me haere tonu koe ki te tango i te maimoatanga auau hei ārai i te toto, hei aukati hoki i te pakaru me te ngoikore o ō hononga.
He maha ngā tikanga maimoatanga matua:
- Te whakakapi i te pūmua toto kua pau (Te rongoā whakakapinga)
- Ētahi atu rongoā motuhake
- Te rongoā mō ngā pānga taha pēnei i te toto ki roto i ngā hononga
Te whakarato i te tauwehenga toto toto ngoikore
Koinei te maimoatanga matua. Ko te tikanga o tēnei ko te hoatu i tētahi horopeta o te matū toto toto e kore e hiahiatia ana ki tō tinana mā roto i tētahi uaua (mā roto i te uaua, mā roto rānei i te uaua IV).
- Te Tauwehe VIII mō te hunga whai hemophilia AHoatu.
- Ka hoatu te Factor IX ki te hunga e pangia ana e te hemophilia B.
E rua ngā huarahi e hangaia ai ēnei matū. Ko tētahi mai i te toto toto i kohaina . Ko tētahi he matū DNA hangai, he matū DNA tauutuutu rānei e hangaia ana i roto i te taiwhanga . Ko ngā momo matū hou e wātea ana i ēnei rā kua hangaia kia roa ake te noho ki roto i te tinana. Nō reira, kāore e hiahiatia kia werohia pinepinetia pērā i mua.
Ētahi atu rongoā motuhake
Haunga te rongoā mō te toto totoka, kei reira anō ētahi atu rongoā hou hei āwhina i te whakahaere i te toto. Mā tō tākuta ēnei e whakamārama ki a koe.
| Rongoā (ingoa waitohu) | Mō wai? | Ngā kōrero nui |
|---|---|---|
| Emicizumab-kxwh (HEMLIBRA) | Mō te hunga whai hemophilia A | Ka āwhina i te aukati i te toto. Kāore tēnei e hoatu mā roto i te uaua, engari hei werohanga kiri i raro i te kiri kotahi i te wiki. |
| Ngā rongoā pēnei i a Adynovate, Idelvion | Mō te hunga he hemophilia A, he hemophilia B rānei | He mea hangai ake ēnei hei whakakapi mō te Factor VIII, te Factor IX rānei. Ka roa ake te noho o ēnei ki roto i te tinana. |
| Desmopressin (DDAVP) | Mō te hunga he hemophilia A ngawari | Ka whakanuia e tēnei rongoā ngā taumata o te tauwehenga VIII o te tinana mō te wā poto. Ka taea te hoatu mā te uaua, hei werohanga, hei rehu ihu rānei. |
| Waikawa Tranexamic, Waikawa Aminocaproic | I ngā wā motuhake | He rongoā pire ēnei e tangohia ana. Mā te mahi ka ārai i te memeha o te toto totoka. |
| Ōbizur | Mō te hunga whai hemophilia A kua riro mai | He āhuatanga motuhake tēnei. Ehara i te mea i whānau mai koe me ia. Ka taea te whanake i muri mai i te ao nā ngā āhuatanga pēnei i te hāputanga me te mate pukupuku. Ka rongoatia ki tētahi momo matū VIII i tangohia mai i ngā poaka. |
Kia tūpato ki te toto e puta ana ki ngā hononga me ētahi atu raruraru.
Ko tētahi tohu noa o te hemophilia ko te toto e rere ana ki roto i ngā hononga . Ka puta pea tēnei i ngā wāhi pēnei i ngā turi, ngā tuke, me ngā pona waewae. Ina tupu tēnei, ka pupuhi, ka mamae hoki te hononga.
- Maimoatanga: He mea nui kia whiwhi tonu koe i te maimoatanga matua. Ki te kore, ka pāngia pea te hononga e te kino tuturu. Hei tāpiri, ka tohutohu tō tākuta kia whakangāwari koe i te hononga, ka pania he hukapapa . Mā tēnei ka whakaiti i te mamae me te pupuhi.
- I muri i te: Kia mutu te mamae, ka tūtohutia pea te whakaora tinana hei āwhina i te whakaora i te nekehanga me te kaha o ngā hononga.
Me tūpato hoki koe ki ngā mahi ā-tinana e mahia ana e koe. Kāore e pai ngā hākinakina katoa mō te tangata he hemophilia. Ka taea e ngā hākinakina pā kino te whakaputa toto o roto. Kōrero ki tō tākuta kia whakatau ai ko ēhea ngā mahi whakakori tinana me ngā hākinakina e tika ana, e kore hoki e tika ana māu.
Ka taea e ngā maimoatanga te whakaputa raruraru?
Ahakoa he tino haumaru ngā maimoatanga i ēnei rā, e rua ngā mea me mōhio koe.
1. Ngā mate toto
I ngā tau o mua, i te tekau tau atu i 1980, he nui te tūponotanga o te pangia e ngā huaketo pēnei i te HIV me te hepatitis mai i ngā āhuatanga toto. Engari ināianei kāore koe e manukanuka ki tēnā. I ēnei rā, ka tirotirohia paitia ngā kaituku toto, ā, ka whakamatautauria ngā toto katoa e tukuna ana mō ngā huaketo, ka purea mā te whakamahi i ngā tikanga motuhake. Nō reira, he tino iti te tūponotanga o te pangia e te mate mai i te maimoatanga. Heoi, e kī ana ngā tākuta kia werohia kia āraihia te hepatitis A me te B.
2. Ngā panonitanga o te pūnaha ārai mate (Ngā aukati)
He ahua uaua tēnei, engari he mea nui kia mārama. I ētahi wā, ka mōhio te pūnaha ārai mate o tō tātou tinana, arā, te pūnaha parepare o tō tātou tinana, ki tēnei matū toto e hoatu ana e tātou hei 'hoariri'. Kātahi ka tīmata te whakangaro i taua matū. Ka kiia tēnei ko te hanganga o ngā "aukati" . Ki te tupu tēnei, tērā pea kāore te maimoatanga e tangohia ana e koe e mahi tika ana. Nō reira, ka whakamātautau auau tō tākuta i ō toto kia kite ai mēnā ka tupu tēnei.
Karere Tangohia ki te Kāinga
- He mate whānau mai te hemophilia e pā ana ki te toto e totohu ana.
- Ko te maimoatanga matua ko te hoatu i te tauwehe VIII, IX rānei o waho, he mea kāore i te rawaka i roto i te tinana.
- Mā tō tākuta e whakatau te maimoatanga pai rawa atu māu, i runga i te momo me te kaha o tō mate.
- He mea noa te toto e rere ana ki roto i ngā hononga, ā, ki te puta, he mea tino nui kia rapu wawe i te maimoatanga.
- He tino haumaru ngā maimoatanga mō te hemophilia e tukuna ana i tēnei rā. Kaua e wehi rawa i a rātou.
- Mena kei a koe, kei tāu tamaiti rānei tēnei āhuatanga, me mahi tahi koe me tō tākuta, me te whai hoki i āna tohutohu.
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