E mōhio ana koe ki te Hemophilia C? Me kōrero tātou mō tēnei mate onge!

Ahakoa he motu iti noa iho, ka roa pea te wā e mutu ai te toto, tika? Kua rongo rānei koe kei te pāngia tētahi o tō whānau e te mate toto? I tēnei rā ka kōrero tātou mō tētahi mate toto he onge noa iho, engari he mea nui kia mōhiotia. Ko te Hemophilia C te ingoa o tēnei.

He aha te Hemophilia C?

He kupu ngāwari noa iho, he momo hemophilia tino onge te hemophilia C. Ko te hemophilia he āhuatanga kāore e totoka tika te toto, arā, ina toto koe, ka mutu āta, kāore rānei e mutu. Ko te hunga whai hemophilia C he pūmua toto motuhake e kiia nei ko te factor clotting , e kiia nei ko te Factor XI , e āwhina ana i te totoka. Ka kiia hoki tēnei ko te Factor XI Deficiency , ā, i ētahi wā ka kiia ko te mate Rosenthal .

Heoi, he ngawari ake ngā tohu o te hemophilia C i ērā o ngā momo hemophilia kē atu (A me B). Heoi, ko te hunga whai hemophilia C ka nui ake te toto i te mea noa i te wā pokanga, i ngā mahi niho rānei. Ka rongoatia tēnei e ngā tākuta ki te plasma hou tio, he mea hanga mai i te toto i kohaina. Ka āwhina tēnei plasma i te toto kia totoka.

He mate noa te hemophilia C?

Kāo, he tino onge tēnei mate . Whakaarohia, i tētahi whenua pērā i Amerika, tata ki te kotahi i roto i te 100,000 tāne me ngā wāhine ka pāngia e te hemophilia C. Ki te whakatauritea ki ētahi atu momo hemophilia, tata ki te 12 i roto i te 100,000 tāne ka pāngia e te hemophilia A , ā, tata ki te 4 i roto i te 100,000 tāne ka pāngia e te hemophilia B. Kāore anō kia tino mārama ngā kairangahau ki te auau o te pānga o te hemophilia A, B rānei ki ngā wāhine.

He aha ngā rerekētanga i waenga i te hemophilia A, B, me C?

He mate toto tuku iho ngā momo hemophilia e toru. Arā, ka pāngia te tukanga toto e te whakarerekētanga ira . Engari he iti noa ngā rerekētanga i waenganui i ēnei momo e toru. Me titiro tātou ki ēnei:

• Ka puta te Hemophilia A me te Hemophilia B ina riro i te tangata tētahi ira kua whakarerekētia mai i tētahi o ōna mātua. Heoi, i roto i te hemophilia C, ka taea te tuku iho i te ira rerekē mai i ngā mātua e rua .
• He rerekē tēnei i te hunga hemophilia A, B rānei, kāore te hunga hemophilia C e pāngia e ngā raruraru toto e pā ana ki ngā hononga, ki ngā uaua rānei . He rerekētanga nui tēnei.
• Ko te tikanga, ko ngā tohu o te hunga whai hemophilia A, B rānei, ka whakatauhia e ngā taumata o ngā pūmua toto totoka, arā, ngā 'pūmua totoka', i roto i ō rātou toto. Hei tauira, ko te tangata whai hemophilia A kino ka tino iti te taumata o taua pūmua. Engari he mea miharo, ko te tangata whai hemophilia C ka tino iti te taumata o taua pūmua, engari he tino ngawari pea ō rātou tohu .
• Ka taea te pā te hemophilia A me te B ki ngā tāngata o ngā iwi katoa. Heoi, he nui ake te kitea o te hemophilia C i roto i ngā tāngata o te iwi Hūrai Ashkenazi . Ehara i te mea kāore e taea e tētahi atu te pāngia e tēnei mate, engari he nui ake te kitea i roto i a rātou.
• He nui ake te kitea o te hemophilia A me te hemophilia B i roto i ngā tāne i ngā wāhine, engari he ōrite te pānga o te hemophilia C ki ngā tāne me ngā wāhine .

He aha ngā tohu o te hemophilia C?

Tērā pea ka pāngia te hunga whai hemophilia C e te toto pumau, kāore e taea te aukati i muri i te pokanga nui, i te whara kino, i te whānautanga rānei. Heoi, kāore rātou e pāngia e te toto ohorere , arā, ko te wā ka tīmata te rere o te toto me te kore he take e kitea ana.

He maha ngā wā ka toto rerekē te toto o te hunga whai hemophilia C i muri i te pokanga niho, te tango niho, te tango tonsill rānei.

Ko ētahi atu tohu pea ko:

• Te toto pinepine o te ihu .
• Ngā marōra i te tinana mai i te mea iti rawa.
• Te toto i roto i te mimi .
• Te toto nui rawa i muri i te kotinga.
• Ngā marō mamae, pupuhi i muri i te pokanga.
• Mō ngā wāhine, ka roa pea te paheketanga mō ētahi rā, he roa rawa atu tēnā .

He aha ngā take o te hemophilia C?

He mate toto tuku iho te Hemophilia C. Ka puta mai tēnei ina kore he pūmua toto e kiia nei ko te Factor XI , tētahi o ngā factor toto totoka 13 e āwhina ana ki te whakaroa, ki te whakamutu rānei i te toto. Nā te mea kāore i a koe te ira F11 tika.

I te nuinga o te wā, kei roto i tēnei ira F11 ngā tohutohu mō te hanga i te Tauwehe XI. Mēnā ka whakarerekētia tēnei ira, arā, ki te rerekē, ka puta te hemophilia C. Tērā pea kāore e ranea te Tauwehe XI e hangaia e tēnei ira rerekē, kāore rānei e puta i te katoa.

Ka riro i ngā tāne me ngā wāhine te hemophilia C mēnā ka tukuna e ngā mātua e rua te ira kua whakarerekētia ki tā rāua tamaiti . Mēnā ka riro i te tangata tētahi ira F11 noa me tētahi ira rerekē, he kaikawe taua tangata i te hemophilia C, engari kāore e whakaatu i ngā tohu.

Nā, tirohia te mea ka tupu ina whānau tamariki ngā mātua he ira rerekē nei:

• Ko ngā tamariki i whānau mai i ngā mātua he rerekētanga ira F11 tēnei , e 25% te tūponotanga ka pāngia e te hemophilia C.
• E 50% te tūponotanga ka riro i ngā tamariki i whānau mai i aua mātua te mate, arā, ko te ira anake kei a rātou engari kāore te mate e pāngia ana.
• E 25% te tūponotanga ka riro i ngā tamariki a aua mātua te ira F11 noa.

Me pēhea te tautuhi a ngā tākuta i te hemophilia C?

E mōhio ana koe ki te āhua o te tātaritanga a ngā tākuta i te hemophilia C? Ka tirohia tō tinana i te tuatahi. Kātahi ka pātai atu rātou mō ō tohumate, pērā i te toto ihu, te toto rānei i muri i te mahi niho. Ka pātai atu hoki rātou mō tō hītori whānau, me te mea kei roto i tō whānau te hemophilia, ētahi atu mate toto rānei . He mea tino nui ēnei mōhiohio hei tātaritanga i te mate.

He aha ngā whakamātautau matua e whakamahia ana hei whakaū i te mate?

Ka whakamahia e tō tākuta ngā whakamātautau matua e rua hei whakaū i tō mate:

• Whakamātautau wā thromboplastin wāhanga whakahohe (APTT): He whakamātautau tēnei e whakamahia ana hei tātaritanga i te hemophilia. Mā tēnei ka mōhio tō tākuta ki te roa o te wā e totoka ai ō toto .
• Whakamātautau toto toto: E whakaatu ana tēnei whakamātautau toto i te momo hemophilia me tōna kaha .

I ētahi wā, ka tono pea tō tākuta kia tukuna ētahi atu whakamātautau:

• Te tatau toto katoa (CBC): Ka ine, ka ako hoki tēnei whakamātautau i ngā pūtau toto.
• Whakamātautau wā prothrombin (PT): Ka tirohia hoki e tēnei te tere o te totoka o tō toto.
• Whakamātautau Fibrinogen: Ka inehia e tēnei whakamātautau toto te nui o te pūmua toto e kiia nei ko te fibrinogen, e āwhina ana i te toto kia totoka.

He mea nui kia mōhio koe he uaua te tautuhi i te hemophilia C i ētahi wā. He aha ai? Kāore pea ngā hua o te whakamātautau toto, inā koa ngā hua o te whakamātautau toto totoka, e hono ki ngā tohu o te tūroro. Hei tauira, ka whakaatu pea te whakamātautau toto totoka he tino iti tō taumata tauwehe, engari kāore pea he tohu āu. Waihoki, tera pea he tohu āu o te hemophilia C ahakoa he noa tō taumata tauwehe. Nō reira ka whakaarohia e te tākuta ēnei mea katoa, ā, ka tae ki te whakatau.

Me pēhea te rongoā mō te hemophilia C?

Kāore pea te hunga whai hemophilia C e hiahia ki te rongoā kia oti rā anō te pokanga, te mahi rānei i tētahi atu tikanga hauora. Mēnā e tika ana, ka whakamahia e ngā tākuta te 'plasma tio hou', he mea hanga mai i te toto i kohaina.me te huinga o ngā rongoā hei aukati i te pakaru o ngā 'pūmua totoka' e hoatu ana hei whakakapinga. Mena he nui rawa te paheketanga o ngā wāhine, e roa ana mō ngā rā maha, ka tohua pea e ngā tākuta he pire ārai whānau .

Ka taea te ārai i te hemophilia C?

Kāo, he mate toto tuku iho te hemophilia C, nō reira kāore e taea te ārai . Heoi, ki te mea kei a koe, kei tētahi rānei o tō whānau tēnei mate, ka taea e te tohutohu ira te āwhina i a koe ki te mārama ki te mōrearea o te tuku iho ki ngā whakatipuranga o muri mai.

He aha ngā mea ka taea e te tangata he hemophilia C te tumanako?

He ngawari ngā tohu o te nuinga o te hunga e pangia ana e te hemophilia C. Kāore i te maha ngā wā ka puta he raruraru hauora nui. Kāore te nuinga o te iwi e puta he tohu tae noa ki te pakeketanga, ā, he tino ngawari noa iho aua tohu.

Heoi anō, tera pea ka pāngia koe e ngā raruraru toto i muri i te pokanga, i te maimoatanga niho rānei. Mena kei a koe te hemophilia C, he mea nui kia pātai atu koe ki tō tākuta mō ngā mahi ārai katoa me mahi e koe . Hei tauira, me whakamōhio atu koe ki tō tākuta i mua i te pokanga me te karo i ētahi rongoā e whakanui ake ana i te toto (pēnei i te aspirin).

Hei whakamutunga, ko ētahi mea nui me maumahara koe

Āe, nō reira, he iti noa ngā mea hei maumahara māu i roto i ngā mea kua kōrerohia e tātou:

• He mate toto tino onge te Hemophilia C.
• I te nuinga o te wā, he tino ngawari ngā tohu, ā, onge noa te pānga mai o ngā raruraru hauora nui.
• He tokomaha ngā tāngata ka kitea noa ngā tohu i te pakeketanga.
• Heoi anō, tera pea ka nui ake tō toto i ētahi atu i te wā e pokanga ana, e rongoatia ana rānei e te niho , nō reira he mea nui kia whakamōhio atu koe ki tō tākuta i roto i ēnei āhuatanga.
• Mena kua tāpaetia koe kei te mate hemophilia C, kaua e mataku. Kōrero ki tō tākuta kia mārama ai koe ki ngā mea me mōhio koe me ngā mahi ārai me mahi e koe .

Kia maumahara, ko te mārama tika ki tētahi āhuatanga hauora te taahiraa pai rawa atu hei whakatau i taua āhuatanga! Kāore koe i te mokemoke, ā, kei te wātea tonu ngā tohutohu me te tautoko hauora ki a koe.