E aʻo kākou e pili ana i ka lāʻau Miglustat. He pila kēia i hoʻohana ʻia no ka mālama ʻana i ka maʻi Gaucher!

ʻAʻole paha ʻoe i lohe nui e pili ana i kēia lāʻau i kapa ʻia ʻo Miglustat. ʻO ke kumu o kēia, he lāʻau kūikawā ia i hāʻawi ʻia no kahi maʻi lapaʻau kakaʻikahi. No laila i kēia lā e kamaʻilio mākou e pili ana i kēia lāʻau i kapa ʻia ʻo Miglustat, a me ka maʻi āna e mālama ai i kapa ʻia ʻo Gaucher. Inā ua kuhikuhi ʻia kēia lāʻau iā ʻoe a i ʻole kekahi āu i ʻike ai, he mea nui loa kēia ʻike iā ʻoe.

He aha ke ʻano lāʻau lapaʻau ʻo Miglustat? He aha kāna hana?

I ka ʻōlelo maʻalahi, ʻo Miglustat kahi lāʻau lapaʻau e kōkua i ka mālama ʻana i nā pae maʻamau o kahi enzyme e kōkua ai i ka wāwahi ʻana i kahi ʻano momona i loko o ko mākou kino. Hoʻohana kūikawā ʻia ia e mālama i ka maʻi Gaucher Type 1 .

I kēia manawa, ke noʻonoʻo nei paha ʻoe i ke ʻano o ka maʻi Gaucher. E hoʻomaopopo iki kākou i kēlā. He maʻi hoʻoilina ka maʻi Gaucher. ʻO ka mea e hana ʻia ma kēia, ʻo ia ka hana o ka glucocerebrosidase, kahi enzyme e pono ai e wāwahi pono i kekahi mau ʻano momona i loko o ko kākou kino (ʻoi aku ka glucocerebroside), ua emi a ʻaʻole loa paha. A laila waiho ʻia kēia mau ʻano momona ma nā ʻāpana like ʻole o ke kino, no ka laʻana, ma ka spleen, ke akepaʻa, a me ka iwi iwi. Hiki i kēia ke hana i nā pilikia olakino like ʻole. No laila, ʻo ka mea a ka lāʻau Miglustat e hana ai, ʻo ia ka hōʻemi ʻana i ka hoʻokumu ʻia ʻana o kēlā mau momona keu i loko o ke kino.

ʻO ka maʻamau, kūʻai ʻia kēia lāʻau lapaʻau ma lalo o ka inoa inoa ʻo Zavesca . Akā e hoʻomanaʻo, i kekahi manawa e hoʻohana paha nā kauka i kēia lāʻau lapaʻau no nā kūlana 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.

He aha nā mea e pono iaʻu e haʻi aku i kaʻu kauka ma mua o ka hoʻohana ʻana i kēia lāʻau?

Ma mua o kou hoʻomaka ʻana e lawe iā Miglustat, aia kekahi mau mea āu e haʻi aku ai i kāu kauka. ʻO ka haʻi ʻole ʻana i kēia mau mea hiki ke hoʻopilikia iā ʻoe. No laila e ʻoiaʻiʻo me kāu kauka e pili ana i kēia mau mea.

• Inā he mau pilikia koʻikoʻi kou i ke aʻalolo , ʻo ia hoʻi ke kuni, ka mae ʻana, a me ke ʻano ʻūlū i kou mau lālā.
• Inā he maʻi puʻupaʻa kou .
• Inā loaʻa iā ʻoe kahi maʻi alerika i Miglustat, kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, nā kala meaʻai, a i ʻole nā ​​​​mea hoʻomalu, e haʻi mai iā mākou, ʻoiai inā he maʻi liʻiliʻi ia.
• Inā hāpai ʻoe a i ʻole e hoʻāʻo ana e hāpai, he mea nui loa kēia.
• Inā he makuahine hānai waiū ʻoe.

Ke ʻike ke kauka i kēia mau ʻoiaʻiʻo, hiki iā ia ke hoʻoholo inā kūpono kēia lāʻau lapaʻau iā ʻoe a ʻaʻole paha, a pehea e hoʻohana pono ai.

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Pehea pololei kaʻu e hoʻohana ai i kēia lāʻau lapaʻau?

He mea nui loa ka ʻike pono ʻana i ke ʻano o ka hoʻohana ʻana i kēia lāʻau. E hahai i nā kuhikuhi a ke kauka a me ka lepili i hāʻawi ʻia e ka hale kūʻai lāʻau lapaʻau.

• Pono e lawe waha ʻia kēia lāʻau lapaʻau me ke aniani wai.
• E lawe i kāu lāʻau lapaʻau i nā manawa maʻamau , e like me ke kauoha a kāu kauka. Eia kekahi laʻana, inā ʻekolu manawa i ka lā, e lawe pololei i kēlā mau manawa.
• Mai lawe i nā lāʻau lapaʻau ma mua o ka mea a kāu kauka e ʻōlelo ai.
• Eia kekahi, mai ho'ōki koke i ka lawe ʻana i ka lāʻau me ka ʻole o ke aʻo ʻana a kāu kauka. ʻO ka hana ʻana pēlā e hoʻonui paha i kou kūlana.

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

Inā ʻoe e hāʻawi ana i kēia lāʻau lapaʻau i nā keiki ʻōpio, pono ʻoe e kamaʻilio me ke kauka keiki e pili ana i ia mea a hahai i kā lākou ʻōlelo aʻo. Pono paha ka mālama kūikawā.

He aha inā lawe ʻoe i ka nui o ka lāʻau lapaʻau? (Overdosage)

Inā manaʻo ʻoe ua lawe nui ʻoe i kēia lāʻau lapaʻau, e kāhea koke i ke kikowaena hoʻomalu lāʻau make kokoke loa a i ʻole ka lumi pilikia o ka haukapila. Mai hoʻonele i ka manawa.

Nā mea nui: Ua kuhikuhi ʻia kēia lāʻau lapaʻau nou wale nō. Mai hāʻawi aku i kekahi no kekahi kumu , ʻoiai inā loaʻa iā lākou nā hōʻailona like me ʻoe.

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

I kekahi manawa e poina paha ʻoe i kahi mahele o ka lāʻau lapaʻau. Inā hana ʻia kēlā, mai hopohopo.

• E lawe i ka lāʻau i hala ʻole i ka wā e hoʻomanaʻo ai ʻoe.
• Eia nō naʻe, inā kokoke ka manawa no kāu mahele aʻe ke hoʻomanaʻo ʻoe, e kāpae i ka mahele i hala ʻole a lawe wale i ka mahele aʻe i ka manawa i hoʻonohonoho ʻia.
• Mai lawe pālua a keu paha i nā lāʻau lapaʻau e uku no kahi lāʻau lapaʻau i hala. ʻO ka hana ʻana pēlā e hiki ai ke hopena i nā hopena ʻaoʻao.

He aha nā pilina ʻē aʻe e hiki ke hana me kēia lāʻau lapaʻau?

Aia kekahi mau lāʻau lapaʻau e hiki ke hoʻopilikia i ka wā e lawe pū ʻia me Miglustat. ʻO ia hoʻi, hiki iā lākou ke hōʻemi i ka pono o Miglustat a hoʻonui paha i nā hopena ʻaoʻao.

• ʻO kahi lāʻau lapaʻau e hiki ke launa pū me kēia he lāʻau lapaʻau i kapa ʻia ʻo imiglucerase .

ʻAʻole piha kēia papa inoa. No laila, e haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau ʻē aʻe a pau (kauoha a me nā lāʻau lapaʻau ʻole), nā mea kanu, nā mea hoʻohui meaʻai, a inā ʻoe e puhipaka, inu waiʻona, a hoʻohana paha i nā lāʻau lapaʻau kū ʻole i ke kānāwai. Hiki i kekahi mau mea ke launa pū me kāu lāʻau lapaʻau.

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

Aia kekahi mau mea e pono ai ʻoe e makaʻala i ka wā e lawe ana iā Miglustat.

• E ʻike i kāu kauka no nā nānā maʻamau. E kōkua kēia i kāu kauka e ʻike i kou ʻano a inā paha e hana pono ana kāu lāʻau lapaʻau.
• Pono paha ʻoe e hana i kekahi mau hana lab i kou wā e lawe ana i kēia lāʻau. Na kāu kauka e haʻi iā ʻoe e pili ana i kēia.
• Hiki i kekahi poʻe ke loaʻa i ka maʻi pākī i ka wā e lawe ana i kēia lāʻau lapaʻau. Inā hana kēia, e kamaʻilio me kāu kauka e pili ana i kāu mea hiki ke hana e pili ana i ia mea. E hāʻawi ʻo ia iā ʻoe i nā ʻōlelo aʻoaʻo kūpono.

Nā kuhikuhi kūikawā no ka hāpai ʻana a me nā kāne:

He ʻāpana koʻikoʻi loa kēia, ʻoiai hoʻi no nā wāhine a me nā kāne e noʻonoʻo ana e hoʻomaka i kahi ʻohana.

• Nā Wahine: Inā ʻoe e hoʻolālā ana e hāpai, a manaʻo paha ʻoe e hāpai ana ʻoe, e haʻi koke i kāu kauka. Aia kahi pilikia o nā hopena koʻikoʻi i ke keiki i hānau ʻole ʻia. No laila e noi i kāu kauka no ka ʻike hou aku e pili ana i kēia.
• Nā Kāne: Mai hoʻolālā e hānau i kahi keiki i kou wā e lawe ana i kēia lāʻau lapaʻau a no 3 mau mahina ma hope o ka hoʻōki ʻana i ka lāʻau lapaʻau. E hoʻohana i nā ʻano hana pale hānau kūpono i kēia manawa. He mea nui loa e kamaʻilio pū me kāu kauka e pili ana i kēia.

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

E like me nā lāʻau lapaʻau āpau, hiki i ka Miglustat ke hana i nā hopena ʻaoʻao, ʻoiai ʻaʻole loaʻa i nā kānaka a pau. He koʻikoʻi kekahi mau hopena ʻaoʻao a pono ʻoe e haʻi koke i kāu kauka inā ʻike ʻoe iā lākou. ʻAʻole koʻikoʻi kekahi, akā inā hoʻomau lākou, he manaʻo maikaʻi e haʻi i kāu kauka .

Nā hopena ʻaoʻao e pono ʻoe e haʻi koke aku i kāu kauka :

Inā ʻike ʻoe i kekahi o kēia mau hōʻailona, ​​e haʻi koke aku i kāu kauka a mea mālama ola paha.

• ʻO ke kuni, ka mae, ke ʻāʻī - ʻoiai hoʻi ma nā lālā.
• Nā loli i ke kaʻina hana menstrual .
• Nā loli i ka ʻike - lilo ka ʻike i mea palalulu, e like me ka ʻike ʻana ma nā ʻāpana ʻelua.
• Haʻalulu - Ka haʻalulu hiki ʻole ke kāohi ʻia o nā lālā.
• Ke kahe koko ʻana a i ʻole ka palapū ʻana ma ke ʻano ʻē - Inā he palapū ʻē kou ma kou kino, a inā ʻaʻole e pau ke kahe koko ʻana mai kahi ʻeha liʻiliʻi.

Nā hopena ʻaoʻao ʻaʻole i koʻikoʻi pinepine, akā pono e hōʻike i kāu kauka inā hoʻomau lākou:

E nalo pinepine kēia i loko o kekahi mau lā, akā inā hoʻomau a hoʻopilikia paha lākou iā ʻoe, e haʻi i kāu kauka .

• Ka maʻi pākī
• Pōʻino
• ʻEha poʻo
• Ka nalowale o ka makemake
• Ka emi ʻana o ka helu sperm - He mea kēia e hoʻopilikia ai i nā kāne.
• Ka luaʻi, ka luaʻi
• ʻŌpū ʻeha , kinoea
• Ka emi ʻana o ke kaumaha

E hoʻomanaʻo, ʻaʻole i piha kēia papa inoa. Inā ʻike ʻoe i kekahi mea ʻē ʻole i loaʻa ʻole ma kēia papa inoa, e haʻi i kāu kauka e pili ana i ia mea. E kelepona i kāu kauka no ka ʻōlelo aʻoaʻo lapaʻau e pili ana i nā hopena ʻaoʻao.

Pehea ʻoe e mālama ai i kēia lāʻau lapaʻau?

He mea nui loa hoʻi e mālama pono i nā lāʻau lapaʻau.

• E mālama iā ia mai ka hiki ʻana aku o nā keiki liʻiliʻi.
• E mālama ma ka mahana o ka lumi, ma waena o 15 a me 30 kekelē Celsius (59 a me 86 kekelē Fahrenheit) . Mai hoʻokuʻu i ka wela nui a i ʻole ke anu.
• Mai hoʻohana i nā lāʻau lapaʻau i pau ka lā. E hoʻolei pono iā lākou.

ʻO ka mea hope loa, kekahi mau mea nui (Leka Lawe-Home)

ʻAe, ke lana nei ko mākou manaʻo ua maopopo iā ʻoe kēia lāʻau lapaʻau i kapa ʻia ʻo Miglustat.

• E hoʻomanaʻo, he hōʻuluʻulu manaʻo wale nō kēia ʻatikala. ʻAʻole ia e uhi i nā kikoʻī āpau.
• Inā he mau nīnau hou aku kāu e pili ana i kēia lāʻau lapaʻau, e ʻoluʻolu e nīnau i kāu kauka, kauka lāʻau, a i ʻole kekahi mea mālama ola kino ʻē aʻe.
• No ka mea, he maʻi laha ʻole ka maʻi Gaucher a he lāʻau lapaʻau kūikawā ʻo Miglustat, he mea nui loa ia e hahai i nā ʻōlelo a kāu kauka.
• E lawe i kāu lāʻau lapaʻau me ke kūpono a me ka manawa kūpono. E makaʻala i nā hopena ʻaoʻao. E ʻike i kāu kauka i nā lā i hoʻonohonoho ʻia.

Ke makemake nei iā ʻoe i ke olakino maikaʻi!

ʻO Miglustat, Zavesca, maʻi Gaucher, enzyme, nā hopena ʻaoʻao o ka lāʻau lapaʻau, nā lāʻau lapaʻau i kuhikuhi ʻia, maʻi Gaucher