Ina he patunga iti tō tinana, ina unuhia rānei tō niho, ka haere tonu te toto , kāore e mutu? Kāore rānei, i ētahi wā ka kitea he maru kikorangi i tō tinana, kāore e pā ki hea? Ka kite koe i ngā maru puta noa i tō tinana, inā koa ka tīmata tāu tamaiti ki te ngokingoki, ki te hikoi rānei? Ki te puta mai ēnei āhuatanga, ko te take pea he mate e kiia nei ko te hemophilia . Kaua e mataku ina rongo koe i tēnei ingoa. Mā te maimoatanga tika , ka taea e koe te noho i te oranga noa, kī tonu. Me kōrero mārama, me te ngāwari hoki mō tēnei i tēnei rā.
He aha te Hemophilia A?
Ki te whakarapopoto, ko te Hemophilia A he āhuatanga e kore ai e totoka tika te toto. I te nuinga o te wā, ina whara tātou, ka totoka te toto hei aukati i te toto. Ka āwhinahia tēnei e ngā pūmua motuhake i roto i ō tātou toto. Ka kiia ēnei e tātou ko ngā "pūtake totoka".
Kāore e nui te pūmua toto toto o te tangata e pangia ana e te hemophilia A, arā, ko te Factor VIII . Ko te kaha o te mate ka whakatauhia e te nui o te whakahekenga o tēnei pūmua Factor VIII. Nō reira, ka wehea kia toru ngā wāhanga:
- He hemophilia ngawari: Kei reira ngā taumata o te Factor VIII ki tētahi taumata.
- Hemophilia ngawari: He tino iti ngā taumata o te Factor VIII.
- He hemophilia kino: He tino iti, he ngaro rānei ngā taumata o te Factor VIII.
I te nuinga o te wā, he mate ira tēnei e horapa ana i roto i ngā whānau. Heoi, i roto i te hautoru o ngā take, ka pāngia tētahi tangata hou e te mate, engari kāore tētahi o te whānau e pāngia ana e taua mate.
He aha te take o te hemophilia?
He mea tēnei e riro mai ana i a tātou mā roto i ngā ira. Whakaarohia, ko ngā āhuatanga katoa o tō tātou tinana e whakatauhia ana e ngā ira. E rua ngā ira X o te wahine (XX), ko te tāne ia he ira X kotahi, he ira Y kotahi (XY).
Kei te ira X te hapa ira e pā ana ki te hemophilia.
Nō reira, ki te mea he "kaikawe" te whaea i tēnei ira hapa, kāore ia e whakaatu i ngā tohu. Nā te mea ko tana ira X hauora kē atu e hanga ana i te pūmua tauwehe VIII e tika ana. Engari ki te riro i tana tama tēnei ira X hapa, ka pāngia taua tama e te hemophilia. Nā te mea kotahi anake te ira X a te tama. Nā tēnei take, he nui ake te hemophilia i roto i ngā tama i ngā kōtiro.
He onge noa iho te pānga o te hemophilia ki ngā pakeke i waenga i te 60 me te 80 tau te pakeke. Ka puta tēnei ina whakaekea e te pūnaha ārai mate o te tinana ngā mea toto totoka hauora. Ka puta anō hoki i te wā e hapu ana, me te mate pukupuku , me ētahi atu mate pūnaha ārai mate .
He aha ngā tohu o te hemophilia?
Ko ngā tohu e whakawhirinaki ana ki te āhua o tō mate, te āhua o te tinana, te āhua kino rānei.
| Taumata o te mate | Ngā āhuatanga e kitea ana |
|---|---|
| He hemophilia ngawari | I te nuinga o te wā, ka puta te toto nui i muri i te pokanga, te tango niho, te whānautanga, te aituā nui rānei. Kāore ētahi tāngata e mōhio kei a rātou tēnei toto tae noa ki te pakeketanga. |
| Hemophilia ngawari | - Ina whara, ka nui rawa te toto e puta. - I ētahi wā ka puta te toto, kāore he take. - Ka ngawari te maru o te tinana, ka kikorangi te tae. - Ina whiwhi koe i te werohanga, ka roa te wā e toto ai. |
| He hemophilia kino | Ahakoa kāore he whara, ka puta tonu te toto. Ka puta te toto ki roto i ngā hononga me ngā uaua . He tino mamae tēnei. |
Ngā tohu whakatūpato o te totohu o te roro
Mena ka pāngia te mahunga o te tangata he hemophilia kino, ahakoa he iti noa te pānga, ka puta te toto ki te roro. He āhuatanga ohorere nui tēnei. Mena he whara tō mahunga, ā, me ētahi o ngā tohu e whai ake nei, waea atu ki tō tākuta tonu, haere rānei ki te tari ohorere tata (ETU).
- Te ānini nui tonu
- Ruaki
- Te hiamoe pinepine, te ngenge nui rānei
- Te ngoikore ohorere, te uaua rānei ki te hikoi
- Tirohanga takirua
- Ngā mate hopuhopu
Me pēhea te tautuhi i te mate?
Mena he mate hemophilia tō tētahi o tō whānau, ka taea e koe te whakamātau i tō pēpi mō te mate i a koe e hapu ana. Heoi anō, he tūponotanga kei roto i ēnei whakamātautau, nō reira me kōrero koe ki tō tākuta.
Ko ngā mate toto nui i roto i ngā tamariki nohinohi ka kitea i roto i te tau tuatahi o te oranga. Ki te tīmata tāu tamaiti ki te hurihuri, ki te ngokingoki, ā, ka tīmata ki te kite i ngā marutanga e ara ake ana i tōna tinana, kōrero ki tō tākuta mō tēnei.
Tērā pea ka pātai atu te tākuta ki a koe i ēnei pātai:
- I pēhea te puta o ēnei marō me te toto?
- Kia pēhea te roa o te toto e haere tonu ana?
- He rongoā kei reira hei tango mā ngā tamariki?
- He raruraru toto toto tō tetahi o tō whānau?
Kātahi ka mahia ētahi whakamātautau toto hei whakaū i te mate. Tērā pea ka tukuna koe ki tētahi tohunga toto.
| Ingoa Whakamātautau | He aha tāu e kite nei i roto i tēnei? |
|---|---|
| Tatau Toto Katoa (CBC) | Ka tirohia ngā momo pūtau i roto i te toto me te taumata o te hemoglobin. Ka āwhina tēnei ki te whakatau mēnā he anemia nā te toto. |
| Ngā whakamātautau PT me te aPTT | Ka ine i te roa o te wā e totohu ai te toto. Ko te uara aPTT ka piki ake i te nuinga o te wā i roto i te hemophilia. |
| Ngā whakamātautau mō te Tauwehe VIII me te Tauwehe IX | Ka ine tika rātou i te nui o tēnei pūmua kei roto i te toto. Mena he iti te tauwehenga VIII, he hemophilia A tēnā. |
| Whakamātautau Ira | Ka taea te tautuhi i te whakarerekētanga ira e puta ai te mate. Mō te wahine, ka taea hoki te whakatau mēnā he kaikawe ia i te mate. |
Me pēhea te rongoā?
Ko te tikanga maimoatanga e whakawhirinaki ana ki te kaha o te mate, tō tau, me ō hiahia whaiaro. Ko te whāinga matua o te maimoatanga he whakakapi i te pūmua tauwehe VIII e ngaro ana i roto i te tinana. Ka kiia tēnei ko te rongoā whakakapinga tauwehe . Ahakoa kāore tēnei e whakaora katoa i te mate, ka taea e ia te āwhina ki te whakahaere i te toto, ā, ka taea e koe te noho i te oranga noa.
E rua ngā momo maimoatanga:
- Whakaora Ārai Mate: Werohanga auau o te matū VIII i runga i te wā kua whakaritea hei ārai i te toto, kaua e tatari kia puta te toto . He mea nui rawa tēnei mō te hunga e pāngia ana e te hemophilia kino.
- Maimoatanga i te wā e hiahiatia ana: Te whiwhi maimoatanga anake ina puta te toto .
E rua ngā momo kano ārai mate o te take VIII:
1. Tauwehe Whakahou VIII: Ngā tauwehe i hangaia i roto i te taiwhanga mā te whakamahi i te hangarau ira. Koinei te mea e whakamahia whānuitia ana i ēnei rā.
2. Tauwehe VIII i ahu mai i te toto: Tauwehe i ahu mai i te toto tangata.
Ka taea hoki e te hunga he hemophilia A ngawari ki te ngoikore te whakamahi i te rongoā e kiia nei ko Desmopressin (DDAVP) . Ka mahi tēnei mā te tuku i te tauwehe VIII kua rongoatia ki roto i te toto.
Hei tāpiritanga, ko ngā rongoā ā-waha pērā i te Tranexamic Acid, e ārai ana i te pakaru o ngā toto toto, ka whakamahia hoki i roto i ngā āhuatanga pērā i te tango niho.
He mea nui: I te mea me whakawhiti toto pinepine te tangata he hemophilia, he mea tino nui kia werohia ia mō te Hepatitis A me te B. Pātai atu ki tō tākuta mō tēnei.
Me pēhea tāu whakahaere i te oranga o ia rā?
I te wā e noho tahi ana koe me te hemophilia, me whakaaro nui ake koe ki te haumaru.
- Kia kaha: Ka whakapakari te korikori tinana i ngā uaua. He pai te tiaki a ngā uaua kaha i ngā hononga. Heoi, karohia ngā hākinakina pā atu pērā i te whutupōro me te mekemeke. He kōwhiringa pai te kaukau, te hikoi, me te eke pahikara (me te potae). Kōrero ki tō tākuta mō ngā mahi e tika ana māu.
- Tiakina ngā tamariki: Mena he tamaiti nohinohi tāu, mauria he potae turi, he potae tuke, me te potae i a koe e takaro ana. Tiakina koe mai i ngā taonga koi i roto i tō whare.
- Hauora niho:Kia mau tonu te akuaku o ō niho. Paraia ō niho i ia rā. Mā tēnei ka āwhina i te whakaiti i te hiahia mō te tango niho me ngā maimoatanga niho nui. I mua i tō haerenga ki te tākuta niho, kia tino kōrero atu koe ki a ia he hemophilia tōu.
- Ngā rongoā kaua e tangohia: Ka taea e ngā rongoā mamae pēnei i te aspirin me ngā NSAID (hei tauira, ibuprofen, diclofenac) te aukati i te toto totoka. Kaua e tango i tētahi rongoā me te kore kōrero ki tō tākuta.
Karere Tangohia ki te Kāinga
- Ko te Hemophilia A he mate ira e puta mai ana i te korenga o te pūmua Factor VIII, e hiahiatia ana mō te toto totoka.
- Ka kitea nuitia tēnei i roto i ngā tama, engari ka taea e ngā wāhine te kawe i te mate.
- Ko ngā tohu matua ko te toto nui rawa atu ahakoa mai i tētahi whara iti noa me te marō.
- Mena ka whara tō upoko, ā, ka puta mai ngā tohu pēnei i te mamae nui o te upoko, te ruaki, te hiamoe rānei, he āhuatanga ohorere tēnei. Rapua tonutia he tohutohu hauora.
- Mā te maimoatanga tika (Whakaora Whakakapinga Āhua) me te noho haumaru, ka taea e te hunga hemophilia te ora i te oranga ora, ora tonu.
- Me kōrero tonu ki tō tākuta ngā rongoā katoa e tangohia ana e koe i mua i te pokanga, i te maimoatanga niho rānei.
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