I ētahi wā, he uaua ngā ingoa o ngā rongoā e tohua ana e ngā tākuta ki a tātou, kāore? Engari ina mārama noa tātou ki te pānga o aua rongoā ki ō tātou tinana, ka tino whakamarie te ngākau. I tēnei rā kei te kōrero tātou mō tētahi rongoā motuhake, arā, ko Burosumab, e hoatu ana hei werohanga. He maimoatanga tino nui tēnei, inā koa mō te hunga e pāngia ana e te mate ira e kiia nei ko te X-linked hypophosphatemia (XLH).
He aha te mea tino ka tupu ki tēnei rongoā?
Ki te whakarapopoto, ko te X-linked hypophosphatemia (XLH) he āhua e nui rawa ai te phosphate kohuke e tukuna ana e ngā whatukuhu e hiahiatia ana e tō tātou tinana. E mōhio ana pea koe, he mea nui te phosphate hei pupuri i te kaha o ō tātou wheua. Ina heke te taumata o te phosphate, ka ngoikore ngā wheua, ka pakarukaru, ā, i roto i ngā tamariki, ka pōturi te tipu, me te mamae hoki o ngā wheua me ngā hononga.
Koinei te wāhi e whai hua ai te kano ārai mate Burosumab. Mā te kano ārai mate nei ka whakahaere i te tukunga o te phosphate mai i te tinana, ka whakahokia te taumata phosphate i roto i te toto ki te taumata noa. Mā tēnei ka taea e ngā wheua te whiwhi i te phosphate e hiahiatia ana e rātou, ā, ka tīmata te tipu kaha ake.
He mea nui, he rongoā a Burosumab hei whakahaere i te mate, ehara i te rongoā. Ko te ingoa waitohu CRYSViTA tēnei e mōhiotia whānuitia ana.
Ngā mea me kōrero e koe ki tō tākuta i mua i te tīmatanga o te maimoatanga
I mua i te tīmatanga o tēnei maimoatanga, me kōrero koe ki tō tākuta i ētahi mea mō tō āhua hauora, nā te mea mā aua mōhiotanga rātou e āwhina ki te whakatau mēnā he tika tēnei rongoā māu.
- Mena he mate tākihi tōu .
- Mena he mate pāwera tōu ki tēnei rongoā Burosumab, ki tētahi atu rongoā, kai, tae rānei.
- Mena kei te hapu koe, kei te tata rānei te whānautanga o tētahi pēpi.
- Mena he whaea whāngai u koe.
Kaua e huna ēnei kōrero i te tākuta, he mea tino nui hoki mō tō haumaru.
Me pēhea te whakamahi i tēnei rongoā?
Ehara tēnei i te rongoā ka taea te tango i te kāinga. He werohanga te Burosumab i raro i te kiri . Ka hoatu ki a koe e te tohunga hauora whakangungua i te hōhipera, i te whare rongoā rānei.
Ka hoatu tēnei ki ngā tamariki nohinohi?
Ae, i ētahi wā motuhake, ka taea te tuku i tēnei rongoā ki ngā tamariki mai i te 1 tau te pakeke. Engari me whai i ngā tūpato motuhake. Nō reira, ki te hoatu e koe tēnei rongoā ki tāu tamaiti, me kōrero ki tō tākuta tamariki mō tēnei.He mea nui kia kōrero pai ki a rātou, kia mārama hoki ki ngā āhuatanga.
A, mehemea ka nui rawa te rongoā ka riro mai i ahau?
Kāore pea tēnei e tupu nā te mea ka hoatu i roto i te hōhipera. Heoi, ki te whakaaro koe kua nui rawa te rongoā i tangohia e koe, waea atu ki te National Poisons Information Centre i te Colombo National Hospital tonu atu. Mēnā rānei, haere ki te Emergency Treatment Unit (ETU) o te hōhipera tata.
He mea nui: Kua tohua tēnei rongoā māu anake. Kaua e tohaina tēnei rongoā ki tētahi atu ahakoa he aha te take.
Me aha ahau mēnā ka ngaro taku horopeta?
He mea tino nui te haere ki te hōhipera/whare hauora i ngā rā kua whakaritea, me te wā kua whakaritea kia angitu ai tēnei maimoatanga. Kaua e mahue tētahi o ēnei wā rongoā mō tētahi take. Ki te kore e taea e koe te haere i te rā kua whakaritea, waea atu ki tō tākuta tonu, ka whakamōhio atu ki a ia mō tēnei mea, ā, me tiki tohutohu mō te rā e whai ake nei.
Ētahi atu rongoā kāore e tika kia whakamahia tahi me tēnei rongoā
He maha ngā rongoā kāore e tika kia tangohia tahitia me te Burosumab, nō reira he mea tino nui kia kōrero koe ki tō tākuta mō ngā rongoā katoa e tangohia ana e koe.
Mena kei te tango koe i ēnei rongoā, me whakahua e koe:
- Calcitriol
- Phosphate ā-waha
Kāore i te oti tēnei rārangi. Nō reira, kōrerotia ki tō tākuta ngā rongoā katoa e tangohia ana e koe (tae atu ki ngā huaora, ngā rongoā otaota, me ngā tāpiringa kai). Kia pono hoki mēnā kei te momi hikareti koe, kei te inu waipiro, kei te whakamahi rānei i ētahi atu tarukino.
Ngā mea hei whakaaroaro i te wā e rongoatia ana
Ki te kore ō tohu e pai ake, ki te kino haere rānei, me kōrero ki tō tākuta. Ka tirotirohia koe e tō tākuta i a koe e tango ana i tēnei rongoā. Me whakamātau toto anō hoki ia i ia wā, i ia wā, hei tirotiro i ngā mea pēnei i ō taumata phosphate.
He aha ngā pānga taha ka puta?
Pērā i ngā rongoā katoa, ka pāngia ētahi tāngata e ngā pānga taha o te Burosumab. Ko ētahi o ēnei he pānga kino, nō reira he mea nui kia mōhio koe ki ēnei.
| Momo pānga taha | Whakaahuatanga |
|---|---|
| Ngā pānga taha me pūrongo tonu ki te tākuta | |
| Ngā uruparenga mate pāwera | He ponana kiri, he mākūkū, he whewhe rānei, he pupuhi o te mata, o ngā ngutu, o te arero rānei. |
| Ngā raruraru i te wāhi werohanga | Te mamae, te whero, te mumura rānei i te wāhi i werohia ai. |
| Ngā mea hei kōrero ki tō tākuta mēnā ka mau tonu, ka whakararuraru rānei | |
| Ngā pānga taha noa | Mamae tuara, mate kōroke, whanoke, kirika, ānini, mamae uaua, mate niho, ruaki. |
Ehara i te mea ko ngā pānga taha katoa tēnei. Mēnā ka pāngia koe e ētahi tohu rerekē, rapua he tohutohu hauora.
Karere Tangohia ki te Kāinga
- He werohanga motuhake a Burosumab e whakahaere ana i ngā taumata phosphate i roto i te tinana, ā, e hoatu ana mō te mate X-linked hypophosphatemia (XLH).
- Ka hoatu tēnei kano ārai mate e tētahi tohunga hauora whai whakangungu i roto i te hōhipera, i te whare rongoā rānei.
- I mua i te tīmatanga o te maimoatanga, me kōrero ki tō tākuta mō ō mate hauora katoa me ētahi atu rongoā e tangohia ana e koe.
- Kaua rawa e mahue ō wā whakarite rongoā. Mēnā kāore e taea e koe te haere mō tētahi take, me whakamōhio tonu atu ki tō tākuta.
- Ki te puta mai ngā tohu mate pāwera (pēnei i te whero o te kiri, te pupuhi), rapua tonutia he tohutohu hauora.
- Mena he pātai āu mō tēnei rongoā, kaua e wehi ki te pātai atu ki tō tākuta.
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