Loaʻa iā ʻoe ka maʻi ʻo Gaucher? E kamaʻilio kākou e pili ana i ka lāʻau lapaʻau ʻo Taliglucerase Alfa?

I kekahi manawa loaʻa iā kākou nā maʻi i hiki ʻole iā kākou ke noʻonoʻo, ʻeā? He maʻi laha ʻole nō hoʻi ka maʻi o Gaucher e pono ai ke mālama pono ʻia. No laila, inā loaʻa iā ʻoe a i ʻole kekahi mea kokoke iā ʻoe kēia maʻi, i kēia lā e kamaʻilio mākou e pili ana i ka lāʻau lapaʻau ʻo Taliglucerase alfa, he lāʻau lapaʻau ia no ia. E hoʻomaopopo wale kākou i ke ʻano o ia mea, pehea e hana ai, a me nā mea e makaʻala ai.

E nānā mua kākou i ke ʻano o ka maʻi ʻo Gaucher.

I ka ʻōlelo maʻalahi, ʻo ka maʻi Gaucher kahi maʻi e kū mai ana ma muli o kekahi mau kumu genetic i loko o ko mākou kino. Nui nā ʻano enzymes e hana ana i ka hana koʻikoʻi loa i loko o ko mākou kino. I loko o kēia maʻi, ʻaʻole i hana pono ʻia kahi enzyme i kapa ʻia ʻo glucocerebrosidase i loko o ko mākou mau cell kino, a i ʻole ua emi iho kāna hana. Hoʻopau kēia enzyme i kekahi mau mea momona i loko o ko mākou kino a hana i nā mea pono mai ia mau mea. No laila, ke emi kēia enzyme, hoʻomaka kēlā mau mea momona e hōʻiliʻili ma kekahi mau wahi o ko mākou kino, no ka laʻana , ka iwi iwi, ka spleen, a me ke akepaʻa . Ke hōʻiliʻili lākou, ʻike ʻia nā hōʻailona like ʻole. ʻO ia hoʻi, hiki i kekahi poʻe ke ʻeha i ka iwi, ka anemia, a me ka spleen i hoʻonui ʻia. ʻOiai he mea paʻakikī iki kēia, ʻaʻole ia he mea nui ke hoʻomaopopo pono ʻia.

No laila he aha kēia lāʻau lapaʻau i kapa ʻia ʻo Taliglucerase Alfa?

ʻO ka Taliglucerase alfa kahi lāʻau lapaʻau i hāʻawi ʻia i nā poʻe me ka maʻi Gaucher, a mākou i kamaʻilio ai ma mua, ma ka hana ʻana i ka enzyme i nele iā lākou i loko o ko lākou kino. I ka pololei, he ʻano enzyme kēia i hana ʻia e ke kanaka . Hoʻohana ʻia ia e kāohi i nā hōʻailona o ka maʻi Gaucher. Akā pono ʻoe e hoʻomanaʻo ʻaʻole kēia he lāʻau lapaʻau e hoʻōla loa i ka maʻi . Akā kōkua ia i ka kāohi ʻana i nā hōʻailona a hoʻomaʻalahi i ke ola.

I kekahi manawa hoʻohana paha nā kauka i kēia lāʻau lapaʻau no nā mea ʻē aʻe, no laila inā he mau nīnau kāu, ʻoi aku ka maikaʻi o ka nīnau ʻana i kāu kauka a mea kūʻai lāʻau paha.

E ʻike pinepine ʻoe i kēia lāʻau lapaʻau ma lalo o ka inoa inoa ʻo ELELYSO .

He aha kaʻu e haʻi aku ai i ka hui lapaʻau ma mua o ka hoʻohana ʻana i kēia lāʻau?

Ma mua o ka hāʻawi ʻia ʻana o kēia lāʻau lapaʻau iā ʻoe, ʻo Taliglucerase alfa, pono kāu hui lapaʻau (hui mālama) e makaʻala i kekahi mau mea. No ka mea, ma muli o kēlā ʻike, hiki iā lākou ke hāʻawi palekana iā ʻoe i ka lāʻau lapaʻau. E nānā kākou i ke ʻano o lākou:

• Inā ua loaʻa iā ʻoe kahi hopena maʻi ʻē aʻe i ka Taliglucerase alfa, nā lāʻau lapaʻau ʻē aʻe, nā meaʻai, nā kala meaʻai, a i ʻole nā ​​mea hoʻomalu, pono ʻoe e haʻi mai iā mākou. Me he mea lā he mea liʻiliʻi kēia, akā he mea nui loa ia.
• Inā hāpai ʻoe, a inā ʻoe e hoʻolālā ana e hāpai i ka wā e hiki mai ana, e hoʻomaopopo pū i kāu kauka.
• Inā he makuahine hānai waiū ʻoe, mai poina e haʻi aku i kēlā.

Ma ka hoʻoponopono ʻana i kēia mau mea, hiki i ke kime lapaʻau ke hoʻolālā i ka lāʻau lapaʻau kūpono loa a palekana loa nāu.

Pehea e hiki ai iaʻu ke hāʻawi iā ʻoe i kēia lāʻau lapaʻau?

Hāʻawi ʻia kēia lāʻau lapaʻau ma o ka hoʻokomo ʻana i loko o kahi aʻa . I ka ʻōlelo maʻalahi, hāʻawi ʻia i loko o kahi aʻa. Hana pinepine ʻia kēia ma kahi haukapila a i ʻole kahi keʻena lapaʻau e kahi loea mālama ola i aʻo ʻia e hāʻawi. ʻO ia hoʻi, ʻaʻole hiki iā ʻoe ke hoʻohana ma ka home. He ʻano pale nō hoʻi kēlā.

Pono anei e hāʻawi ʻia kēia lāʻau lapaʻau i nā keiki liʻiliʻi?

Inā e hoʻohana ana kāu keiki i kēia lāʻau lapaʻau, ʻo Taliglucerase alfa, pono ʻoe e kamaʻilio me kāu kauka keiki e pili ana i ia mea. No ka mea, i kekahi manawa, pono e mālama pono ʻia ke hāʻawi ʻana i kēia ʻano lāʻau lapaʻau i nā keiki ʻōpio. Pono e hoʻoponopono ʻia nā mea e like me ka nui o ka lāʻau a me ka papa kuhikuhi o ka lawelawe ʻana e kūpono iā lākou.

He aha ka mea e hana ai inā lawe ʻoe i ka nui o ka lāʻau lapaʻau?

E hoʻomanaʻo, inā manaʻo ʻoe ua hāʻawi nui ʻia kēia lāʻau lapaʻau iā ʻoe, a inā manaʻo ʻoe ua hāʻawi ʻia iā ʻoe, pono ʻoe e kāhea koke i kahi kikowaena kaohi lāʻau make a i ʻole ka lumi pilikia kokoke loa o ka haukapila . ʻO ka hana wikiwiki ka mea nui loa i nā kūlana e like me kēia.

E ʻoluʻolu e hoʻomaopopo: Ua kuhikuhi ʻia kēia lāʻau lapaʻau nou wale nō. Mai hāʻawi aku i kahi hoaaloha a ʻohana paha, ʻoiai inā loaʻa iā lākou nā hōʻailona like. ʻOkoʻa paha ka lāʻau lapaʻau kūpono a me ka nui o ka lāʻau no kēlā me kēia kanaka.

He aha kāu e hana ai inā e poina ʻoe i kahi mahele o ka lāʻau lapaʻau?

He mea nui loa ka lawe ʻana i kēia lāʻau lapaʻau i ka manawa kūpono me ka ʻole o ka hoʻopoina ʻana i nā lāʻau. ʻO kēia no ka mea e loaʻa iā ʻoe ka pōmaikaʻi nui loa mai ka lāʻau lapaʻau ke lawe wale ʻoe. Inā ʻaʻole hiki iā ʻoe ke hele i ka haukapila/keʻena lapaʻau no ka mālama ʻana i ka lā i hoʻonohonoho ʻia, e kelepona koke i kāu kauka a i ʻole ke kauka olakino a e haʻi iā lākou . A laila e haʻi lākou iā ʻoe i ka mea e hana ai ma hope.

He aha nā mea ʻē aʻe e hiki ke launa pū me kēia lāʻau lapaʻau?

Ua ʻōlelo nui ʻia ʻaʻohe pilina koʻikoʻi e manaʻo ʻia ma waena o kēia lāʻau Taliglucerase alfa a me nā lāʻau ʻē aʻe. Eia naʻe, ʻaʻole ia manaʻo ʻaʻole ia e launa pū me kekahi mea. I kekahi manawa, hiki ke loaʻa nā hopena ʻaoʻao liʻiliʻi.

No laila, e hāʻawi i kāu kauka i kahi papa inoa piha o nā lāʻau lapaʻau āpau āu e lawe ai - ʻaʻole wale nā ​​​​mea i kuhikuhi ʻia e ke kauka, akā ʻo nā mea kanu āpau, nā lāʻau lapaʻau i kauoha ʻole ʻia, a i ʻole nā ​​​​mea hoʻohui meaʻai e like me nā huaora. Eia kekahi, inā ʻoe e puhipaka, inu waiʻona, a hoʻohana paha i nā lāʻau lapaʻau kū ʻole i ke kānāwai.E ʻoiaʻiʻo hoʻi e pili ana i kēlā, no ka mea, hiki i kekahi mau mea ke loaʻa nā hopena maikaʻi ʻole ke hui pū ʻia me kāu lāʻau lapaʻau.

He aha kāu e makaʻala ai i ka wā e lawe ai i kēia lāʻau?

E kipa aku i kāu kauka no nā nānā mau ʻana e ʻike ai pehea e holomua ai kāu lāʻau lapaʻau. He mea nui loa kēia. E nānā kāu kauka iā ʻoe e ʻike inā e hana ana ka lāʻau lapaʻau a inā e hoʻomaikaʻi ana kāu mau hōʻailona. Inā ʻaʻole hoʻomaikaʻi kāu mau hōʻailona, ​​a inā e ʻoi aku ka ʻino , e haʻi i kāu kauka a i ʻole ke kauka lapaʻau. Mai hūnā i kekahi mea iā ʻoe iho.

He aha nā hopena ʻaoʻao e hiki ke loaʻa mai kēia lāʻau lapaʻau?

E like me nā lāʻau lapaʻau āpau, hiki i ka Taliglucerase alfa ke hana i kekahi mau hopena ʻaoʻao. ʻAʻole loaʻa i nā kānaka a pau, akā he mea maikaʻi ke makaʻala iā lākou. He koʻikoʻi kekahi a pono e mālama koke ʻia e ke kauka. He mea maʻamau kekahi a e nalo i loko o kekahi mau lā. E nānā kākou iā lākou.

Nā hopena ʻaoʻao e pono e hōʻike koke ʻia i ke kauka a i ʻole ke kauka olakino:

Inā ʻike ʻoe i kekahi o kēia mau hōʻailona, ​​​​he mea nui e ʻimi koke i ke kōkua lapaʻau me ka hoʻokaʻulua ʻole, no ka mea, hiki i kēia mau mea ke lilo i mau hōʻailona o kahi maʻi koʻikoʻi:

• Nā hopena aleri : ʻO kēia ka ʻili ʻulaʻula koke, ka maneʻo nui a i ʻole ka hives, ka pehu ʻana o ka maka, nā lehelehe, a i ʻole ke alelo. Hiki i kēia mau mea ke pilikia i ka hanu ʻana.
• Nā kui lima a i ʻole nā ​​​​lehelehe polū .
• Nā pilikia hanu , me he mea lā e pau ana kou hanu.
• ʻEha ka umauma a i ʻole ka manaʻo o ka ʻūmiʻi ma ka umauma.
• ʻŪhū hiki ʻole ke hoʻōki.
• Ka puʻuwai wikiwiki a ʻano ʻole paha .
• ʻUlaʻula o ka maka, wela o ke kino a me ka hou (flushing) .
• Ke koko haʻahaʻa , ʻo ia hoʻi ke ʻano o ka poniuniu a me ke poʻo māmā.
• ʻEha, ʻulaʻula, a i ʻole ka huhū ma kahi i hāʻawi ʻia ai ka inikini , a i kekahi manawa hiki nō hoʻi ke pehu.
• Ka pehu ʻana o nā kuʻekuʻe wāwae, nā wāwae, nā lima.

Nā hopena ʻaoʻao ʻaʻole pono ka mālama ʻana i ke olakino, akā pono e hōʻike ʻia i ke kauka inā hoʻomau a hoʻopilikia paha lākou:

E nalo pinepine kēia mau mea ma hope o kekahi mau lā, akā inā hoʻomau lākou, a inā paha he mea hoʻonāukiuki lākou e pale aku iā ʻoe mai ka hana ʻana i kāu mau hana o kēlā me kēia lā, e haʻi i kāu kauka:

• Ke anu nei, ke haʻalulu nei .
• Ka maʻi kahe .
• Kuni .
• ʻEha poʻo .
• Ka luaʻi, ka luaʻi .
• ʻAʻole hiki ke hoʻomanawanuiManaʻo luhi loa.
• ʻO ka ʻōpū ʻeha, e like me ka indigestion .

ʻAʻole kēia papa inoa nā hopena ʻaoʻao āpau. Inā ʻike ʻoe i kekahi mea ʻē aʻe a loli paha i kou kino, e ʻoluʻolu e nīnau i kāu kauka. Mai lawe māmā i kekahi mea.

Ma hea ʻoe e mālama ai i kēia lāʻau lapaʻau?

ʻOiai e hāʻawi ʻia kēia lāʻau lapaʻau iā ʻoe ma kahi haukapila a i ʻole ke keʻena lapaʻau, ʻaʻole pono ʻoe e mālama iā ia ma ka home . ʻO ia hoʻi, ʻaʻole pono ʻoe e hopohopo e pili ana i ka pala o ka lāʻau lapaʻau a i ʻole e mālama pono ʻia. Aia kēlā kuleana i nā limahana o ka haukapila a i ʻole ke keʻena lapaʻau.

ʻO ka mea hope loa, eia kekahi mau mea e hoʻomanaʻo ai ʻoe:

He lāʻau koʻikoʻi ʻo Taliglucerase alfa e kōkua ana i ka kaohi ʻana i nā hōʻailona o ka maʻi ʻo Gaucher. Pili kēia i ka hoʻololi ʻana i kahi enzyme i nele i ke kino. Hāʻawi ʻia kēia lāʻau ma ke ʻano he injection i loko o kahi vein, ma kahi haukapila. E hōʻoia e haʻi i kāu kauka inā loaʻa iā ʻoe kekahi mau maʻi allergies, hāpai, a i ʻole e lawe ana i kekahi mau lāʻau ʻē aʻe. Hiki ke loaʻa nā hopena ʻaoʻao, no laila e ʻimi koke i ka ʻōlelo aʻoaʻo lapaʻau inā loaʻa iā ʻoe kekahi mau hōʻailona koʻikoʻi . He mea nui loa ka loaʻa ʻana o ka lāʻau i ka manawa kūpono a noho mau i ka launa pū ʻana me kāu kauka.

Mai makaʻu e nīnau i kāu kauka, kauka lāʻau lapaʻau, a i ʻole ka mea mālama ola kino i nā nīnau a hopohopo paha āu e loaʻa ai. Aia lākou ma laila e kōkua iā ʻoe. He mea nui hoʻi kou olakino iā lākou.

ʻO Taliglucerase alfa, ka maʻi o Gaucher, enzyme, lāʻau lapaʻau, nā hopena ʻaoʻao