He aha te Hemophilia? Tohutohu, Take, me te Maimoatanga

Ko te hemophilia tētahi mate toto whatu e kore ai e pakaru tika tō toto ina whara koe. Ka puta mai tēnei nā te kore e hanga e tō tinana ngā pūtau whakakapi e kiia nei ko ngā take whakakapi e āwhina ana ki te mutu te toto. Ahakoa he wehi te ahua, he miriona ngā tāngata e ora ana me te hemophilia, me te ora tonu, me te tiaki hauora tika me ngā whakarerekētanga noho.

He aha te Hemophilia?

Ko te hemophilia tētahi āhuatanga i whānau mai e pā ana ki te kaha o tō toto ki te hanga i ngā pakaru. Ina whiua koe, e tika ana kia mātotoru tō toto me te hanga i tētahi poraka hei mutu i te toto. He iti ake ngā taumata o ngā pūtau whakakapi motuhake i ngā tāngata e pangia ana e te hemophilia, no reira ka roa ake te mutu o te toto.

Whakaarohia te pakaru toto rite ki te raupapa mahi, kei reira ia kaupae e whakawhirinaki ana ki tetahi atu. I roto i te hemophilia, ka ngaro, ka ngoikore rānei tētahi hononga nui i roto i tēnei raupapa. Kāo reira e tikanga ka mate koe i te toto mai i te tapahi pepa, engari e tikanga ana he hiahia ngā whara ki te aro nui me te maimoatanga.

Ko te āhuatanga e pā ana ki ngā tane, ahakoa ko ngā wāhine ka taea te kawe me te whakaatu i ētahi wā i ngā tohu ngawari. Kei te noho mai i te whānautanga, engari ka kore pea e puta ngā tohu kia tae ra ano ki muri i te tamarikitanga ina ka kaha ake ngā tamariki.

He aha ngā momo Hemophilia?

E rua ngā momo matua o te hemophilia, kei reira ia momo e puta mai ana i te kore o ngā pūtau whakakapi rerekē. Ko te Hemophilia A te momo tino noa, e pā ana ki te 80% o ngā tāngata e pangia ana e tēnei āhuatanga. Ka puta mai ina kore e hanga e tō tinana te pūtau VIII.

Ko te Hemophilia B, e kiia ana hoki ko te mate Kirihimete, ka puta mai ina ngaro koe, ka iti rānei ngā taumata o te pūtau IX. E rua ngā momo e puta mai ana i ngā tohu rite, engari he hiahia ngā huarahi rerekē o te maimoatanga, nā te mea he rerekē ngā pūtau whakakapi.

Ka taea e ia momo te ngawari, te noa, te kino rānei, kei te nui o te pūtau whakakapi e whakaputa ana tō tinana. He iti iho i te 1% o ngā taumata pūtau whakakapi noa ngā take kino, ā, ko ngā take ngawari pea he 5-40% o ngā taumata noa.

He aha ngā Tohutohu o te Hemophilia?

Ko te tohu matua ko te toto e roa atu ana i te noa i muri i ngā whara, i ngā mahi hauora rānei. Ka kite pea koe ka roa ake te mutu o te toto i ngā tapahi iti, ka māmā rānei te pupuhi mai i ngā pakaru iti.

Ko ēnei ngā tohu matua hei titiro atu, mā te tīmata ki ngā mea tino noa:

• Ngā pupuhi nui, hohonu e puta mai ana ngāwari mai i ngā pakaru iti
• Te toto e haere tonu ana mō te wā roa i muri i ngā tapahi, i ngā mahi niho rānei
• Ngā ihu toto e āhua kore e mutu
• Te mamae o ngā hononga me te pupuhi, ina koa i ngā turi, i ngā ringa, i ngā waewae rānei
• Te toto i roto i te mimi, i te paru rānei
• Ngā wā marama nui i ngā wāhine e mau ana i te ira

Ka taea e te toto o roto ki ngā hononga me ngā uaua te puta i te mamae nui me te pupuhi. Ka puta pea tēnei momo toto kahore he whara marama, ina koa i ngā take kino. He āwangawanga te toto hononga, nā te mea ka taea e ngā kaupapa maha te whakarawe i te hononga i te wā.

I roto i ngā take onge, engari he kino, ka taea te puta o te toto ki te roro, ki ētahi atu tūmomo nui rānei. He tino pea tēnei i muri i ngā whara o te upoko, me te hiahia ki te tiaki hauora tonu. Ko ngā tohu ko ngā mamae o te upoko, te ruaki, te whakapohehe, te ngoikore rānei i tetahi taha o te tinana.

He aha ngā Take o te Hemophilia?

Ko te hemophilia e puta mai ana i ngā whakarerekētanga ira e pā ana ki te whakaputa i ngā pūtau whakakapi. Ka riro mai ēnei whakarerekētanga, arā, ka tukuna mai i ngā mātua ki ngā tamariki mā ngā ira kei runga i te cromosome X.

Nā te mea he kotahi noa te cromosome X i ngā tane, he hiahia noa iho ki tetahi kōpe o te ira whakarerekē hei whakawhanake i te hemophilia. E rua ngā cromosome X i ngā wāhine, no reira he hiahia noa iho ki ngā whakarerekētanga e rua hei whai i te āhuatanga katoa, he tino onge tēnei.

E rua-toru o ngā take ka riro mai i ngā mātua e mau ana i te ira. Heoi, tata ki te toru-toru o ngā take ka puta mai nā ngā whakarerekētanga ira whaiaro, arā, kāo reira he hītori whānau o te āhuatanga.

Ko te whakarerekētanga ira e pā ana ki ngā tohutohu e whakamahi ana tō tinana hei hanga i ngā pūtau whakakapi VIII, IX rānei. Kahore he nui o ēnei pūtau, ka mutu te mahi pakaru toto noa, ka puta mai te toto roa.

Nōhea te Tiro atu ki te Taakuta mō te Hemophilia?

Me rapu tonu koe i te tiaki hauora ina kite koe i ngā tohu o te toto nui. Kei roto i ēnei ngā mamae nui o te upoko i muri i te whara o te upoko, te toto nui e kore e mutu, te tohu rānei o te toto o roto penei i te toto i roto i te mimi, i te paru rānei.

Mō ngā āwangawanga e haere tonu ana, tirohia tō taakuta ki te kite koe i ngā tauira pupuhi onge, ngā ihu toto maha, te mamae rānei o ngā hononga me te pupuhi kahore he take marama. Me arotake ngā tamariki e māmā ana te pupuhi, e whai ana rānei i ngā kaupapa toto i muri i ngā whara iti.

Ki te whai koe i te hītori whānau o te hemophilia, me te whakaaro ki te whānau tamariki, ka taea e te tohutohu ira te āwhina i a koe ki te mārama ki ngā tūponotanga. Ka taea e ngā wāhine e kawe ana te pai te whakamātautau hei mārama ki ō rātou taumata pūtau whakakapi.

He mea nui te tiaki āwangawanga mō tetahi whara o te upoko, te whara nui, te toto rānei e kore e whakautu ki ngā tikanga awhina tuatahi noa. Kaua e tatari kia mutu te toto i runga i a ia ake i ēnei ahuatanga.

He aha ngā Tūponotanga mō te Hemophilia?

Ko te tūponotanga matua ko te whai i te hītori whānau o te hemophilia, nā te mea he āhuatanga ira i whānau mai. Ki te mea he kawe tō whaea, he hemophilia rānei tō pāpā, he nui ake tō tūponotanga ki te riro i te āhuatanga, ki te waiho rānei hei kawe.

Ko te waiho hei tane e nui ake ai tō tūponotanga, nā te mea kei runga i te cromosome X te whakarerekētanga ira. He hiahia noa iho ki tetahi kōpe o te ira whakarerekē ngā tane hei whakawhanake i te hemophilia, ā, he hiahia noa iho ki ngā kōpe e rua ngā wāhine.

Ahakoa kahore he hītori whānau, ka taea te puta mai ngā whakarerekētanga ira whaiaro, ahakoa he iti ake te whakataurite. Ka taea e ētahi papatipu iwi te whai i ngā reiti iti ake, engari e pā ana te hemophilia ki ngā tāngata o ngā iwi me ngā momo katoa o te ao.

He aha ngā Whakaotinga pea o te Hemophilia?

Ko te whakarawe hononga tētahi o ngā whakaotinga roa e tino noa ana ina puta mai te toto i ngā hononga kotahi. I te wā, ka taea e tēnei te arahi ki te mate pūngāwerewere, te mamae roa, me te ngoikore o te nekehanga ki te kore e whakahaere tika.

Ko ēnei ngā whakaotinga matua e taea te whakawhanake:

• Te whakarawe hononga mau tonu mai i ngā kaupapa toto maha
• Te mamae roa me te iti o te nekehanga
• Te toto uaua e taea te pehi i ngā uaua
• Te mate mai i ngā whakawhitinga toto (onge me ngā tirotiro hou)
• Te whakawhanake i ngā kaiwhakawehe e kore ai e whai hua te maimoatanga

Ko ngā kaiwhakawehe ko ngā antibodies e whakawhanake ana tō pūnaha ārai i etahi wā ki ngā maimoatanga pūtau whakakapi. Ka puta mai tēnei i te 20-30% o ngā tāngata e whai ana i te hemophilia A kino, ka uaua ake te maimoatanga.

I roto i ngā take onge, ka taea e ngā kaupapa toto kino te whakamataku, ina koa ina puta mai ki te roro, ki te korokoro, ki ētahi atu wāhi nui rānei. Heoi, me te maimoatanga tika me te tiaki, ka taea te aukati, te whakahaere rānei i ngā whakaotinga maha.

Me pēhea te Whakatau i te Hemophilia?

Ko te whakatau e whakauru ana i ngā whakamātautau toto e ine ana i ō taumata pūtau whakakapi me te pai o te pakaru o tō toto. Ka tīmata tō taakuta me te taumaha toto katoa me ngā whakamātautau e ine ana i te wā pakaru.

Ka taea e ngā whakamātautau pūtau motuhake te whakatau i te pūtau whakakapi e kore nei e ranea me te kino o te kore. Ka ine ēnei whakamātautau i te taumata mahi o ngā pūtau VIII me IX i roto i tō toto.

Ka taea e te whakamātautau ira te kimi i te whakarerekētanga motuhake e puta mai ana i te hemophilia me te āwhina i ngā whakatau mahere whānau. Ka taea hoki e tēnei whakamātautau te whakatau mena ko ngā mema whānau wahine he kawe o te ira.

Ki te whai koe i te hītori whānau, ka taea te mahi whakamātautau i te wā hapu mā te amniocentesis, mā te chorionic villus sampling rānei. Kāo te whakamātautau whānau hou, engari he tūtohutanga te whakamātautau ki te whai koe i te hītori whānau.

He aha te Maimoatanga mō te Hemophilia?

Ko te maimoatanga matua e whakauru ana i te whakakapi i ngā pūtau whakakapi ngaro mā ngā werohanga. Ka taea te hoatu ēnei pūtau whakakapi i ia rā hei aukati i ngā kaupapa toto, i te tono rānei ina puta mai te toto.

Ko te maimoatanga aukati e tikanga ana te whiwhi i ngā werohanga pūtau i ia rā hei pupuri i ngā taumata whakakapi tika. Ka āwhina tēnei huarahi ki te aukati i te toto whaiaro me te whakarawe hononga, ina koa i ngā tāngata e whai ana i te hemophilia kino.

Ko te maimoatanga tono e whakauru ana i te hoatu i ngā pūtau whakakapi ina puta mai te toto. Ka tika pea tēnei huarahi mō ngā tāngata e whai ana i te hemophilia ngawari, i te noa rānei e kore e whai i ngā kaupapa toto maha.

Ko ngā maimoatanga hou e whakauru ana i ngā pūtau roa ake e hiahia ana ki ngā werohanga iti ake me ngā maimoatanga kore-pūtau e mahi rerekē ana hei whakaputa i te pakaru. Ka taea e ētahi tāngata te whai hua mai i ngā rongoā e āwhina ana ki te aukati i te pakaru o ngā pakaru toto.

Me pēhea te Tango i te Maimoatanga Kāinga i te wā o te Hemophilia?

He maha ngā tāngata e whai ana i te hemophilia e ako ana ki te hoatu i ō rātou ake werohanga pūtau i te kāinga. Ka taea e tēnei te maimoatanga tere ina puta mai te toto, ka māmā ake te maimoatanga aukati.

Pupurihia he kete awhina pai me ngā pūtau whakakapi, ngā pūwero, me ētahi atu rauemi. Kia mohio ngā mema whānau ki te kite i ngā kaupapa toto me te wā hei rapu i te tiaki āwangawanga.

Whakamahia te huka me te pehanga ki ngā wāhi toto i te wā e whakarite ana i te maimoatanga pūtau. Whakaarahia te wāhi e pā ana ki te mea ka taea me te karo i ngā rongoā penei i te aspirin e taea te whakanui i te tūponotanga toto.

Pupurihia tētahi pukapuka toto hei aroturuki i ngā kaupapa, i ngā maimoatanga, me ngā whakautu. Ka āwhina ēnei korero i tō rōpū hauora ki te whakarerekē i tō mahere maimoatanga me te kimi i ngā tauira.

Me pēhea te Aukati i te Hemophilia?

Nā te mea he āhuatanga ira te hemophilia, kāo reira e taea te aukati i te tikanga noa. Heoi, ka taea e te tohutohu ira me te whakamātautau te āwhina i ngā whānau ki te mahi i ngā whakatau whakamārama.

Ka taea e ngā kawe te whakamātautau hei whakatau i ō rātou tūponotanga motuhake ki te tuku i te āhuatanga ki ō rātou tamariki. Kei te wātea te whakamātautau i mua i te whānautanga mō ngā whānau e whai ana i te hītori hemophilia.

Ko te mea ka taea e koe te aukati ko ngā whakaotinga toto mā te whakahaere tika. Ko te maimoatanga aukati i ia rā, te karo i ngā mahi tūponotanga nui, me te pupuri i te hauora niho pai katoa e āwhina ana ki te whakaiti i ngā kaupapa toto.

Ko te noho tonu ki ngā whakakakahu me te pupuri i te hauora pai katoa e āwhina ana ki te aukati i ngā mate e taea te whakakino i te whakahaere hemophilia.

Me pēhea te Whakarite mō tō Hui Taakuta?

I mua i tō hui, kohikohia ngā korero mō tetahi hītori whānau o ngā mate toto. Tuhia ngā pātai motuhake mō ngā tohu, ngā kōwhiringa maimoatanga, me ngā whakarerekētanga noho.

Mau mai tētahi rārangi o ngā rongoā me ngā taapiri katoa e inu ana koe, tae atu ki ētahi hua-kāinga. Pupurihia tētahi rēkōta o ngā kaupapa toto hou, tae atu ki te wā i puta mai ai me te roa o te roa.

Whakarite ki te kōrero mō tō taumata mahi me ētahi whakawhitinga kua kite koe. Me mārama tō taakuta ki te pānga o te hemophilia ki tō oranga o ia rā hei tūtohutanga i ngā maimoatanga tika.

Whakaarohia te kawe mai i tētahi mema whānau, i tētahi hoa rānei hei tautoko me te āwhina ki te maumahara i ngā korero nui i kōrerotia i te wā o te hui.

He aha te Tango Matua mō te Hemophilia?

Ko te hemophilia tētahi āhuatanga ira e taea te whakahaere e pā ana ki te pakaru toto, engari kāo reira e hiahia ki te whakaiti i tō oranga nui. Me te tiaki hauora tika, te maimoatanga, me ngā whakarerekētanga noho, ka taea e te nuinga o ngā tāngata e whai ana i te hemophilia te ora tonu, te ora mahi.

He mea nui te whakatau wawe me te maimoatanga tika hei aukati i ngā whakaotinga penei i te whakarawe hononga. Ko te mahi tata atu ki tētahi rōpū hauora motuhake e āwhina ana ki te whakarite ka whiwhi koe i ngā maimoatanga tino whai hua e wātea ana.

Ko te matua ko te mārama ki tō momo me tō kino o te hemophilia, katahi ka whakawhanake i tētahi mahere maimoatanga whānui e tika ana mō tō noho. Ko te aroturuki i ia rā me ngā whakarerekētanga e āwhina ana ki te whakatika i tō tiaki i te wā.

Ngā Pātai E Tino Uihia Ana mō te Hemophilia

Ka taea e ngā tāngata e whai ana i te hemophilia te takaro hākinakina?

Ae, ka taea e te tini o ngā tāngata e whai ana i te hemophilia te whai wāhi ki ngā hākinakina me ngā tūpato tika. Ko ngā mahi iti-whakapā penei i te kauhoe, te ara, me te tenisi ngā kōwhiringa haumaru. He hiahia ngā hākinakina whakapā ki te whakaaro nui me te kōrero ki tō rōpū hauora mō ngā whakamarumaru atu me ngā whakarerekētanga maimoatanga.

He mate ka taea te hora te hemophilia?

Kāo, kāo te hemophilia he mate ka taea te hora. He āhuatanga ira koe i whānau mai, kāo tētahi mate ka taea te hora atu i te tangata ki te tangata. Kāo e taea te hopu i te hemophilia mai i te noho tata atu ki tetahi e whai ana, mai i te pānga toto rānei.

Ka taea e ngā wāhine te whai hemophilia?

Ahakoa he onge, ka taea e ngā wāhine te whai hemophilia ki te riro mai i ngā ira whakarerekē i ngā mātua e rua. He maha ake ngā wāhine he kawe e kite pea i ngā tohu toto ngawari. Ka taea tonu e ngā kawe wahine te whai i ngā raruraru toto, ina koa i te wā marama, te whānautanga, te pokanga rānei.

E hā roa ngā tāngata e ora ana me te hemophilia?

Me te maimoatanga hou, ka taea e ngā tāngata e whai ana i te hemophilia te whai i ngā tau ora noa, i ngā tau ora tata noa rānei. Ko te matua ko te whiwhi i te tiaki hauora tika, te whai i ngā mahere maimoatanga, me te whakahaere i te āhuatanga i mua hei aukati i ngā whakaotinga.

He rongoā mō te hemophilia?

I tēnei wā, kāo reira he rongoā mō te hemophilia, engari he tino whai hua ngā maimoatanga ki te whakahaere i te āhuatanga. Ko te rangahau rongoā ira e whakaatu ana i te tumanako mō te heke mai, ā, kua whakaatu ētahi whakamātautau hauora i ngā hua whakatenatena mō te whakarato i ngā otinga maimoatanga roa.