Ahakoa he motu iti noa iho tōu, kāore e mutu te toto? Me kōrero tāua mō te hemophilia?

Kei te mahara koe i tō tamarikitanga, ina hinga koe, ā, ka whāwhā tō turi, tō tuke rānei, ka mutu te toto i muri i tētahi wā? He mea whakamiharo tēnā? Ina toto tātou, he pūnaha tō ō tātou tinana hei aukati i tēnā, arā, he pūnaha e hanga ana i te toto kia totoka. Engari kei reira ētahi tāngata, ā, kāore tēnei tukanga totoka e mahi tika i roto i ō rātou tinana. Koinei te wā e kōrero ai tātou mō tētahi mate e kiia nei ko te hemophilia . He ahua kino pea tēnei, engari mā te whakahaere tika , he mate ka taea te rongoā pai.

He aha rawa te hemophilia?

He whakarāpopototanga noa iho, ko te hemophilia he āhuatanga e kore ai e totoka tika te toto, arā, ina toto tātou, kāore e mutu ngāwari . He mate ira te nuinga, arā, ka taea te tuku iho i roto i ngā ira mai i tētahi whakatipuranga ki tētahi whakatipuranga.

Whakaarohia he motu iti tō ringa. I te nuinga o te wā, ka mahi tahi ētahi pūmua i roto i ō tātou toto, e kiia nei ko ngā matū toto totoka , hei kati i te patunga me te aukati i te toto. He rite ki te whakapiri i tētahi kōhao ki te pakitara.

Engari i roto i te tangata he hemophilia, ka ngaro tetahi o ēnei matū toto i roto i te nui e tika ana, kāore rānei te matū toto e mahi tika. Koinei te raruraru. Koinei te take ka roa te toto e puta mai ana ahakoa he whara iti noa iho, ka ngāwari rānei te maru.

Me pēhea te toto totoka noa

Ina tīmata te toto, he maha ngā mahi hei aukati.

1. Ko te mea tuatahi ka tupu ko te whakawhāiti i ngā uaua toto. Kātahi ka paku heke te nui o te toto e rere ana ki waho.

2. Kātahi ka tae mai ngā pūtau iti e kīia nei ko ngā pereti toto ki te wāhi i whara ai, ka piri tahi, ka hanga he momo ārai iti.

3. Muri iho, ka whakahohehia ngā matū toto toto i kōrerotia e au i mua ake nei, ka mahi tahi tetahi i muri i tetahi, ka hanga he mata kaha e kiia nei ko te fibrin , ka whakapakari ake i te ārai pereti toto, ā, ka mutu katoa te toto.

Ko te mea ka tupu i te hemophilia, i tēnei taahiraa tuatoru, ka ngaro tētahi o ngā mea totoka , ā, kāore e puta he totoka kaha.

He momo hemophilia anō kei reira?

Ae, e rua ngā momo matua o te hemophilia, i runga i te ngoikore o te tauwehenga toto toto .

Hemophilia A

Koinei te momo hemophilia tino noa. Ka puta mai i te korenga o te toto toto VIII e ranea ana, i te kore rānei e mahi tika.

Hemophilia B

Ka kiia hoki tēnei momo ko te Mate Kirihimete . Nā te ngoikore o te iwa o ngā matū toto totoka (Te Mate IX) i puta ai.Kāore he aha mēnā kāore i te rawaka, kāore he aha mēnā kāore e mahi tika.

He tino ōrite ngā tohu o ngā momo e rua. Heoi, he mea tino nui kia tautuhia tika ēnei momo e rua i te wā e rongoāhia ana. Nā te mea me hoatu te rongoā i runga i te āhuatanga kua heke.

Te kino o tēnei āhuatanga

Ka rerekē te kaha o te hemophilia i ia tangata, i ia tangata, i runga i te nui o te matū toto toto ngoikore kei roto i te tinana.

• Hemophilia ngawari: Ko te hunga he hemophilia ngawari he iti ake i te mea noa o ō rātou tauwehenga toto toto. Tērā pea ka toto noa iho rātou mō te wā poto mena he whara nui, he pokanga, he tango niho rānei. Tērā pea kāore rātou e mōhio kei a rātou te hemophilia tae noa ki te puta mai o tētahi mea kino.
• Hemophilia ngawari: He iti ake ngā āhuatanga toto toto o ēnei tāngata. Tērā pea ka nui rawa te toto i a rātou ahakoa he whara iti noa iho. I ētahi wā, ka toto noa iho rātou, kāore he take (toto ohorere).
• He hemophilia kino: He tino iti ngā taumata o ngā matū toto totoka o ēnei tāngata. Ka taea e rātou te toto ki roto i ngā hononga me ngā uaua, kāore he take e kitea ana. Ahakoa te maru iti rawa, ka taea e rātou te whakararuraru nui.

He aha tēnei e tupu ai? He aha ngā take?

He mate ira te hemophilia, arā, ka tukuna iho i ngā mātua ki ngā tamariki mā roto i ngā ira.

Te pūtake mai i te tukunga iho (tukunga iho hono-X)

Kei te ira X te ira mō te hemophilia. E mōhio ana koe, e rua ngā ira X (XX) o ngā wāhine, ko ngā tāne ia he ira X kotahi, he ira Y kotahi (XY).

• He tamaiti kōtiro: Ka whiwhi i tētahi X mai i tōna whaea, me tētahi X mai i tōna pāpā.
• He tamaiti tāne: Ka whiwhi i tētahi X mai i te whaea, me tētahi Y mai i te matua tāne.

Nā, ki te mea kei runga i te ira X te ira hapa e puta ai te hemophilia,

• Ki te riro mai i te tamaiti taua ira X hapa i tōna whaea, ka pāngia ia e te hemophilia. Nā te mea kotahi anake tana ira X. Ki te mea he hapa kei runga, kāore he X kē atu hei whakakapi.
• Mena ka riro i te kōtiro tētahi ira X hapa i tōna whaea, i tōna pāpā rānei, engari he ira X hauora tōna, kāore ia e whakaatu i ngā tohu. Engari he kaikawe ia. Ko te tikanga o tēnei ahakoa kāore ia i te hemophilia, ka taea e ia te tuku i te ira hapa ki āna tamariki. He tino onge, ka taea hoki e ngā kaikawe wahine te whakaatu i ngā tohu ngawari.

Koia te take e pā pinepine ai te hemophilia ki ngā tāne .

Whakaarohia, mēnā he whaea e kawe ana i te hemophilia, e 50% te tūponotanga ka pāngia ia tamaiti tāne e te hemophilia. Waihoki, e 50% te tūponotanga ka pāngia ia tamaiti wahine e te mate.

He whānau kei roto i tēnei? (Ngā whakarerekētanga ira tūpono)

Kāore e hiahiatia ana kia pāngia tetahi o te whānau e te hemophilia. I ētahi wā, i roto i te 30% o ngā take, ka puta te hemophilia hei whakarerekētanga tūpono i roto i te ira. I taua wā, kāore pea tetahi atu o te whānau i pāngia e te mate i mua.

He aha ngā tohu o te hemophilia? Me pēhea te tautuhi i tōna mate?

He rerekē ngā tohu o te hemophilia i runga i te kaha o te mate. Ko ngā tohu noa ko:

• Te putanga pinepine o ngā marō nui, hōhonu: Ahakoa he puku iti noa, ka taea e ia te whakaputa i tētahi marō nui.
• Te toto tonu mai i te whara, i te tango niho, i muri rānei i te pokanga.
• Te toto o te ihu, kāore he take.
• Ngā kapia toto.
• Te toto ki roto i te hononga (hemarthrosis): He tino mamae tēnei. Ka pupuhi te hononga, ka wera, ā, kāore e taea te neke tika. Ko ngā hononga pēnei i ngā turi, ngā tuke, me ngā pona waewae te nuinga o te wā ka pāngia. I te wā roa, ka taea hoki e tēnei te whakararu i ngā hononga.
• Te toto ki roto i te uaua: Ka puta hoki te mamae me te pupuhi.
• Te toto i roto i te mimi, i te tūtae rānei.
• Mō ngā pēpi: I ētahi wā ko te tohu tuatahi ko te toto tonu i muri i te kotinga. I muri rānei i te werohanga, ka pupuhi rawa te wāhi, ka toto.
• He mate tino kino, engari he onge, ko te toto e rere ana ki roto i te roro. Ka puta pea ngā tohu pēnei i te mamae nui o te upoko, te ruaki, te hiamoe, me te hopuhopu. He āhuatanga ohorere tēnei.

Me pēhea te whakatau a te tākuta he hemophilia tēnei? (Tauātanga)

Mena kei a koe, kei tāu tamaiti rānei tētahi o ēnei tohu, ko te mea pai ko te toro atu ki te tākuta. Ko te tikanga ka whakatauhia e te tākuta te mate mā ēnei huarahi e whai ake nei:

1. Te pātai mō te hītori whānau: Te tirotiro mēnā kei roto i te whānau tētahi o te whānau he hemophilia, he raruraru toto rānei.

2. Ka whakahaerehia he whakamātautau tinana: Te tirotiro mēnā he marō, he hononga pupuhi, me ētahi atu.

3. Ka mahia ngā whakamātautau toto:

• Ngā whakamātautau tirotiro: Ka ine ēnei i te roa o te toto e totoka ana. Hei tauira, ko ngā whakamātautau pēnei i te PTT (Partial Thromboplastin Time) me te PT (Prothrombin Time) . Tērā pea ka roa ake ngā uara PTT i roto i te hemophilia.
• Ngā whakamātautau ira toto totoka: Ka whakamahia ēnei hei whakatau mēnā he ngoikore te ira VIII me te ira IX, me te nui hoki. Ka whakamahia tēnei hei whakatau i te momo me te kaha o te hemophilia.

Ahakoa i te wā e hapu ana, mēnā he hītori whānau mō te hemophilia, ka taea te whakahaere whakamātautau hei tirotiro mēnā he hemophilia te pēpi.

He aha ngā maimoatanga mō tēnei? (Maimoatanga)

Ahakoa he mate kore e taea te rongoā te hemophilia, he tino whai hua ngā maimoatanga e wātea ana.Ka taea e ēnei maimoatanga te āwhina ki te whakahaere me te ārai i te toto, ā, ka āwhina i a koe kia ora i tētahi oranga pai ake.

Te Whakaora Whakakapinga

Koinei te maimoatanga matua. Ko te hoatutanga ki te tinana he matū toto totoka (Matū VIII, Matū IX rānei) kāore i te kaha i roto i te tinana mā te uaua (te werohanga ā-uaua, te werohanga ā-intravenous rānei). Ka hangaia ēnei matū mai i te toto toto tangata, mā te hangarau ira rānei (ngā hua hangarua).

E rua ngā huarahi e whakahaerehia ai tēnei maimoatanga:

1. Whakaora ārai mate: I roto i tēnei, ka tukuna te matū ki te tinana i ētahi wā i te wiki, i mua i te puta o te toto. Ka taea e tēnei te ārai i te toto ohorere, inā koa ki roto i ngā hononga. Ko te nuinga o te wā ka mahia tēnei mō te hunga he hemophilia kino.

2. Whakaora i runga i te tono: I tēnei, ka tukuna te matū i muri i te tīmatanga o te toto. Ka whakamahia tēnei maimoatanga mō te hunga he hemophilia ngawari me te hunga kāore i te whiwhi i te rongoā ārai.

Ētahi atu rongoā

• Desmopressin (DDAVP): He rongoā tēnei ka taea te whakamahi mā te hunga he hemophilia A ngāwari tōna. Ka mahi mā te tuku i te Factor VIII kua rongoatia ki roto i te tinana. Ka taea te hoatu hei rehu ihu, hei werohanga rānei.
• Ngā rongoā ārai-fibrinolytic: Hei tauira , te waikawa tranexamic . Ko te mahi a ēnei rongoā mā te whakaroa i te memeha o te toto totoka. He mea whai hua ēnei i roto i ngā āhuatanga pēnei i te tango niho me te toto ihu.
• Rongoā mamae: Ka taea e koe te tango i ngā mea pēnei i te paracetamol hei whakamamae i te mamae e puta mai ana i te toto i roto i ngā hononga. Heoi, kāore i te tūtohutia ngā rongoā pēnei i te aspirin me ngā NSAID (hei tauira, ibuprofen, diclofenac) mō te hunga hemophilia, nā te mea ka taea e rātou te whakanui ake i te mōrearea o te toto.

He aha tāu e mahi ai ina toto koe?

He iti noa ngā mea me mahi e koe ina pāngia koe e te toto. Kia maumahara ki te tikanga RICE .

• R (Okiokinga): Whakangāwaritia te hononga, te uaua rānei kua whara. Kaua e nekeneke.
• Ahau (Hukapapa): Tāpirihia he putea hukapapa ki te wāhi whara mō te 15-20 meneti pea, he maha ngā wā i te rā. Mā tēnei ka whakaiti i te pupuhi me te mamae.
• C (Pēhanga): Takaia te wāhi whara ki te takai rapa kia paku piri ai.
• E (Teitei): Kia mau te ringa, te waewae rānei kua whara ki runga ake i te taumata o te ngākau.

I a koe e mahi ana i ēnei mea, me kōrero koe ki tō tākuta, ā, me whiwhi maimoatanga Factor mēnā e tika ana.

Me pēhea te noho me te hemophilia

He uaua te noho me te hemophilia, engari mā te whakahaere tika , te mōhio, me te tautoko, ka taea e koe te noho i te oranga noa, oraora hoki.

• Tautoko mai i tētahi tīma tākuta tohunga: I te wā e rongoā ana i te hemophilia,He mea tino nui te whiwhi tautoko mai i tētahi tīma kei roto ko te tohunga toto, ngā nēhi, ngā kaiwhakaora tinana, me ngā kaimahi hapori. Mā rātou koe e tohutohu mō te maimoatanga, te whakakori tinana, me te noho haumaru.
• Whakauru atu ki ngā mahi haumaru: Me karo te hunga whai hemophilia i ngā hākinakina ka whara nui (hei tauira, te whutupōro, te mekemeke). Engari, me whakauru atu ki ngā mahi haumaru pēnei i te kaukau, te hikoi, me te eke pahikara (me te potae). Kōrero ki tētahi kaiwhakaora tinana hei whiriwhiri i tētahi mahi e tika ana māu.
• Kia mau tonu te hauora o ngā niho: He mea tino nui te ārai i te pirau niho me te mate kapia, nā te mea he tūponotanga kei te toto i te wā e mahi ana i ngā tikanga pēnei i te tango niho. Me haere tonu ki te toro atu ki te taote niho.
• Tautuhinga whakatūpato hauora: Me mau tonu he poroporo, he kāri rānei e kī ana he hemophilia tōu. He mea tino whai hua i roto i te āhuatanga ohorere.
• Tautoko pāpori: He kaha nui te kōrero ki ētahi atu tāngata hemophilia me ō rātou whānau, me te whakapuaki i ngā wheako. Mena he whakahaere pēnei, uru atu ki a rātou.
• Te tumanako mō te heke mai: Kei te kitea tonutia ngā maimoatanga hou mō te hemophilia. Kei te haere tonu hoki ngā rangahau mō ngā mea pēnei i te rongoā ira . Kia taea ai e tātou te whai tumanako mō te heke mai.

He Karere hei Kawea ki te Kāinga

He raruraru toto totoka te hemophilia, engari ehara i te mea hei wehi, ā, ka taea te whakahaere pai .

Ko te mea nui ko te rapu wawe i te tohutohu hauora mēnā ka puta ngā tohu, te kimi i te tautuhi tika, me te whai i te maimoatanga e whakaratohia ana.

Ki te mea he hemophilia koe, he tangata rānei e mōhio ana koe, kia mahara, ehara i te mea ko koe anake. Mā te mātauranga, te tautoko, me te maimoatanga e hiahiatia ana e koe, ka taea hoki e koe te noho ora, ora kaha. Kaua e mutu te tumanako!

` Hemophilia, toto, toto totoka, mate ira, Take VIII, Take IX