I kekahi manawa, he mea paʻakikī iki nā inoa o nā lāʻau lapaʻau a nā kauka e kuhikuhi mai ai iā kākou, ʻeā? Akā, ke hoʻomaopopo wale kākou i ke ʻano o ka hopena o kēlā mau lāʻau lapaʻau i ko kākou kino, he mea hōʻoluʻolu nui ia. I kēia lā, ke kamaʻilio nei kākou e pili ana i kekahi lāʻau lapaʻau kūikawā, ʻo ia hoʻi ʻo Burosumab, i hāʻawi ʻia ma ke ʻano he inikini. He lāʻau lapaʻau koʻikoʻi loa kēia, ʻoiai no ka poʻe e ʻeha nei i kahi maʻi genetic i kapa ʻia ʻo X-linked hypophosphatemia (XLH).
He aha ka mea e hana maoli me kēia lāʻau lapaʻau?
I ka ʻōlelo maʻalahi, ʻo ka X-linked hypophosphatemia (XLH) kahi kūlana kahi e hoʻokuʻu nui ai nā puʻupaʻa i ka mineral phosphate e pono ai ko mākou kino. E like me kāu e ʻike ai, he mea nui ka phosphate no ka mālama ʻana i ko mākou mau iwi i ka ikaika. Ke hāʻule nā pae phosphate, hiki i nā iwi ke lilo i nāwaliwali, palupalu, a i nā keiki, ulu ʻole, a me ka ʻeha i nā iwi a me nā hono.
ʻO kēia kahi e komo mai ai ka lāʻau pale Burosumab. Hana kēia lāʻau pale ma ke kāohi ʻana i ka hoʻokuʻu ʻia ʻana o ka phosphate mai ke kino a hoʻihoʻi i ka pae phosphate i loko o ke koko i ka maʻamau. ʻAe kēia i nā iwi e loaʻa ka phosphate a lākou e pono ai a hoʻomaka e ulu ikaika.
ʻO ka mea nui, he lāʻau lapaʻau ʻo Burosumab e kāohi ana i ke kūlana, ʻaʻole he lāʻau lapaʻau. ʻIke nui ʻia kēia lāʻau lapaʻau ma ka inoa inoa ʻo CRYSViTA.
Nā mea e pono ai ʻoe e haʻi i kāu kauka ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau
Ma mua o kou hoʻomaka ʻana i kēia lāʻau lapaʻau, pono ʻoe e haʻi i kāu kauka i kekahi mau mea e pili ana i kou kūlana olakino, no ka mea, e kōkua kēlā ʻike iā lākou e hoʻoholo inā kūpono kēia lāʻau lapaʻau iā ʻoe a ʻaʻole paha.
- Inā he pilikia kou e pili ana i ka puʻupaʻa .
- Inā loaʻa iā ʻoe kahi hopena maʻi i kēia lāʻau lapaʻau Burosumab, kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, a mea hoʻoluʻu paha.
- Inā hāpai ʻoe, a i ʻole ke kali koke nei i kahi pēpē.
- Inā he makuahine hānai waiū ʻoe.
Mai hūnā i kēia mau ʻoiaʻiʻo mai ke kauka mai, no ka mea, he mea nui loa ia no kou palekana.
Pehea ʻoe e hoʻohana ai i kēia lāʻau lapaʻau?
ʻAʻole kēia he lāʻau lapaʻau hiki iā ʻoe ke lawe ma ka home. He inikini ʻo Burosumab ma lalo o ka ʻili . Hāʻawi ʻia ia iā ʻoe e kekahi loea mālama ola i aʻo ʻia ma kahi haukapila a i ʻole ke keʻena lapaʻau.
Ke hāʻawi nei ʻoe i kēia i nā keiki liʻiliʻi?
ʻAe, i kekahi mau hihia kūikawā, hiki ke kuhikuhi ʻia kēia lāʻau lapaʻau i nā keiki e like me ka makahiki 1. Akā pono e mālama ʻia nā hana palekana kūikawā. No laila, inā ʻoe e hāʻawi ana i kēia lāʻau lapaʻau i kāu keiki, e kūkākūkā me kāu kauka pediatric e pili ana i ia mea.He mea nui e kamaʻilio pono me lākou a ʻike i nā kikoʻī.
He aha inā loaʻa iaʻu ka nui o ka lāʻau lapaʻau?
ʻAʻole paha e hiki kēia no ka mea hāʻawi ʻia ma kahi haukapila. Eia nō naʻe, inā manaʻo ʻoe ua lawe nui ʻoe i kēia lāʻau lapaʻau, e kelepona koke i ke Kikowaena ʻIke Poisons National ma ka Halemai Lahui ʻo Colombo . A i ʻole e hele i ka Emergency Treatment Unit (ETU) o ka haukapila kokoke loa.
Mea nui: Ua kuhikuhi ʻia kēia lāʻau lapaʻau nou wale nō. Mai kaʻana like i kēia lāʻau lapaʻau me kekahi no kekahi kumu.
He aha kaʻu e hana ai inā e poina iaʻu kahi lāʻau?
He mea nui loa ka hele ʻana i ka haukapila/keʻena lapaʻau i nā lā i hoʻonohonoho ʻia a i ka manawa i hoʻonohonoho ʻia no ka holomua o kēia lāʻau lapaʻau. Mai poina i kekahi o kēia mau kau lāʻau lapaʻau no kekahi kumu. Inā ʻaʻole hiki iā ʻoe ke hele i ka lā i hoʻonohonoho ʻia, e kāhea koke aku i kāu kauka a e haʻi iā ia e pili ana i ia mea, a e kiʻi i ka ʻōlelo aʻo no ka lā aʻe e hiki mai ana.
Nā lāʻau lapaʻau ʻē aʻe ʻaʻole pono e hoʻohana pū ʻia me kēia lāʻau lapaʻau
Aia kekahi mau lāʻau lapaʻau ʻaʻole pono e lawe pū ʻia me Burosumab, no laila he mea nui loa e haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau āpau āu e lawe nei.
Inā ʻoe e lawe ana i nā lāʻau lapaʻau ma lalo nei, e hoʻomaopopo pono e haʻi iā lākou:
- ʻO Calcitriol
- ʻO ka phosphate waha
ʻAʻole i piha kēia papa inoa. No laila e haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau āpau āu e lawe ai (me nā huaora, nā lāʻau lapaʻau lāʻau, a me nā mea hoʻohui meaʻai). Eia kekahi, e ʻoiaʻiʻo e pili ana i ka puhipaka ʻana, inu waiʻona, a hoʻohana paha i nā lāʻau ʻē aʻe.
Nā mea e noʻonoʻo ai i ka wā o ka mālama ʻana
Inā ʻaʻole e hoʻomaikaʻi kāu mau hōʻailona, a inā paha e ʻoi aku ka ʻino, e haʻi i kāu kauka. E nānā pono kāu kauka iā ʻoe i kou wā e lawe ana i kēia lāʻau. Pono nō hoʻi ʻo ia e hana i nā hoʻokolohua koko i nā manawa maʻamau e nānā i nā mea e like me kou pae phosphate.
He aha nā hopena ʻaoʻao e hiki mai ana?
E like me nā lāʻau lapaʻau āpau, hiki iā Burosumab ke hana i nā hopena ʻaoʻao i kekahi poʻe. Hiki i kekahi o kēia mau mea ke koʻikoʻi, no laila he mea nui e makaʻala iā lākou.
| ʻAno o ka hopena ʻaoʻao | Wehewehena |
|---|---|
| Nā hopena ʻaoʻao e pono e hōʻike koke ʻia i ke kauka | |
| Nā hopena alerika | ʻŌhūhū ʻili, maneʻo a hives paha, pehu o ka maka, lehelehe a i ʻole ke alelo. |
| Nā pilikia ma ka wahi injection | ʻEha, ʻulaʻula, a mumū paha ma kahi i inikini ʻia. |
| Nā mea e haʻi aku ai i kāu kauka inā hoʻomau a hoʻopilikia paha lākou | |
| Nā hopena ʻaoʻao maʻamau | ʻEha kua, paʻa paʻa, poniuniu, kuni, ʻeha poʻo, ʻeha ʻiʻo, maʻi niho, luaʻi. |
ʻAʻole kēia papa inoa i nā hopena ʻaoʻao āpau. Inā loaʻa iā ʻoe kekahi mau hōʻailona ʻē, e ʻoluʻolu e ʻimi i ke kōkua lapaʻau.
Leka Lawe-Home
- He inikini kūikawā ʻo Burosumab e kaohi ana i nā pae phosphate i loko o ke kino a hāʻawi ʻia no ke ʻano X-linked hypophosphatemia (XLH).
- Hāʻawi ʻia kēia lāʻau pale e kekahi loea lapaʻau i aʻo ʻia ma ka haukapila a i ʻole ke keʻena lapaʻau.
- Ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau, e haʻi i kāu kauka e pili ana i kou mau kūlana olakino a me nā lāʻau lapaʻau ʻē aʻe āu e lawe nei.
- Mai hōʻalo i kāu mau manawa lāʻau lapaʻau i hoʻonohonoho ʻia. Inā ʻaʻole hiki iā ʻoe ke hele no kekahi kumu, e hoʻomaopopo koke i kāu kauka.
- Inā loaʻa nā hōʻailona maʻi ʻaleka (e like me ka ʻulaʻula o ka ʻili, ka pehu ʻana), e ʻimi koke i ke kōkua lapaʻau.
- Inā he mau nīnau kāu e pili ana i kēia lāʻau lapaʻau, mai makaʻu e nīnau i kāu kauka.
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