Loaʻa iā ʻoe a i ʻole kāu keiki ka MPS I? E aʻo kākou e pili ana i ka lāʻau pale Laronidase!

I kekahi manawa loaʻa iā kākou nā maʻi i hiki ʻole iā kākou ke noʻonoʻo, ʻeā? ʻO kekahi o ia ʻano maʻi ʻo Mucopolysaccharidosis I, a mākou e kapa nei ʻo MPS I no ka pōkole. He ʻano maʻi kakaikahi kēia. Inā loaʻa iā ʻoe a i ʻole kāu keiki kēia ʻano maʻi, maopopo iaʻu ke paʻakikī a me ke kaumaha. Akā, mai hopohopo, aia nā lāʻau lapaʻau e hiki ke kōkua i ka kaohi ʻana i kēia mau hōʻailona. I kēia lā e kamaʻilio mākou e pili ana i kekahi lāʻau lapaʻau koʻikoʻi, ʻo ia hoʻi kahi lāʻau pale i kapa ʻia ʻo Laronidase. E nānā kākou i kāna hana a pehea e hoʻohana ʻia ai.

He aha ke ʻano lāʻau lapaʻau ʻo Laronidase?

I ka ʻōlelo maʻalahi, ʻo Laronidase kahi lāʻau lapaʻau e hoʻihoʻi i kahi enzyme kūikawā i nalowale a hemahema paha i loko o ko mākou kino. E noʻonoʻo, kōkua kēia mau enzymes i nā mea āpau i loko o ko mākou kino e hana pono. E like me nā limahana liʻiliʻi. I kēia manawa, i loko o ke kino o ka poʻe me MPS I, ua nalowale kekahi enzyme a hana pono ʻole paha. Hāʻawi ʻia kēia lāʻau lapaʻau e hoʻopiha i kēlā hemahema. Kōkua kēia i ka kaohi ʻana i kekahi o nā hōʻailona o ka maʻi. Akā hoʻokahi mea e hoʻomanaʻo ai ʻaʻole kēia he lāʻau lapaʻau e hoʻōla piha i ka maʻi. Akā kōkua nui ia ma ka hōʻemi ʻana i nā hōʻailona a me ka hoʻomaʻalahi iki ʻana i ke ola.

I kekahi manawa, ʻike paha ʻoe i kēia lāʻau lapaʻau ma lalo o ka inoa inoa ʻo Aldurazyme. Hiki ke hoʻohana ʻia kēia lāʻau lapaʻau no nā mea ʻē aʻe. Inā he mau nīnau kāu e pili ana i ia mea, e nīnau i kāu kauka a mea kūʻai lāʻau paha .

He aha nā mea e pono ai ʻoe e haʻi i kāu hui lapaʻau ma mua o ka hoʻomaka ʻana i kēia lāʻau lapaʻau?

Ma mua o ka hoʻomaka ʻana i kēia lāʻau Laronidase, pono ʻoe e haʻi aku i kāu hui lapaʻau, ʻo ia hoʻi ke kauka a me ke kahu maʻi, e pili ana i kēia mau mea. No ka mea, he mea nui loa iā lākou ke ʻike i kēia mau mea i mea e kōkua pono ai iā ʻoe.

• E haʻi mai iā mākou inā ua loaʻa iā ʻoe kahi hopena maʻi i kēia lāʻau lapaʻau, kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, nā kala, a i ʻole nā ​​​​mea mālama.
• Inā hāpai ʻoe a i ʻole ke manaʻolana nei e hāpai, e haʻi iā lākou.
• Inā he makuahine hānai ʻoe, pono ʻoe e haʻi i kēlā.

Inā ʻoe e haʻi aku i kēia mau mea iā lākou me ka hūnā ʻole ʻana, e hiki iā lākou ke mālama iā ʻoe ma ke ʻano kūpono loa iā ʻoe. ʻEā?

Pehea ʻoe e loaʻa ai kēia lāʻau lapaʻau?

Hāʻawi ʻia ʻo Laronidase ma ke ʻano he infusion i loko o kahi aa. ʻAʻole kēia he lāʻau lapaʻau hiki iā ʻoe ke lawe ma ka home ma kāu iho.Hāʻawi ʻia ia e kekahi loea lapaʻau i aʻo ʻia ma kahi haukapila a i ʻole ke keʻena lapaʻau. ʻO ia hoʻi, e hāʻawi aku ke kauka a kahu maʻi paha iā ʻoe. No laila, ʻaʻohe mea e makaʻu ai, ua akamai lākou i ia mea.

Hiki ke hāʻawi ʻia kēia lāʻau lapaʻau i nā keiki liʻiliʻi?

ʻAe, hiki ke hāʻawi ʻia kēia lāʻau lapaʻau i nā pēpē e like me 6 mahina i kekahi mau hihia i koho ʻia. Eia nō naʻe, aia kekahi mau mea e makaʻala ai i ka hāʻawi ʻana i nā keiki liʻiliʻi. No laila, inā ʻoe e hāʻawi ana i kēia lāʻau lapaʻau i kāu keiki, ʻoi aku ka maikaʻi o ke kūkākūkā pono ʻana me kāu pediatrician a ʻike i nā kikoʻī āpau.

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

ʻOiai ua hāʻawi ʻia kēia lāʻau lapaʻau ma lalo o ka nānā ʻana a ke kauka, ua haʻahaʻa loa ka manawa kūpono o ka overdose. Eia nō naʻe, i ka hihia kakaikahi āu e manaʻo ai ua lawe nui ʻoe i ka lāʻau lapaʻau, a inā manaʻo ʻoe i kekahi mea ʻē, pono ʻoe e kāhea koke i kahi kikowaena hoʻomalu lāʻau make a i ʻole ke keʻena pilikia . Eia naʻe, ke haʻi hou nei au, ua haʻahaʻa ka manawa kūpono o kēia hana, no ka mea, ua hāʻawi ʻia kēia ma lalo o ka nānā ʻana o ke kauka.

Mea nui: Nou wale nō kēia lāʻau lapaʻau. Mai kaʻana like me nā poʻe ʻē aʻe.

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. Inā ʻaʻole hiki iā ʻoe ke hele i ka haukapila a i ʻole ke keʻena lapaʻau i ka lā a i ʻole ka manawa i hoʻonohonoho ʻia, a inā ʻoe e poina i kahi mahele lāʻau, e kāhea koke i kāu kauka a i ʻole ke kauka olakino. E haʻi lākou iā ʻoe i ka mea e hana ai ma hope.

Hiki i kēia lāʻau lapaʻau ke launa pū me nā lāʻau lapaʻau ʻē aʻe? (Nā Hana like)

Ma keʻano laulā, ʻaʻole i manaʻo ʻia kēia lāʻau lapaʻau, ʻo Laronidase, e hana i nā pilina nui me nā lāʻau lapaʻau ʻē aʻe. ʻO ia hoʻi, ʻaʻole ia e pane iki me nā lāʻau lapaʻau ʻē aʻe.

Eia naʻe, ʻaʻole kēia manaʻo ʻaʻohe pilikia. No laila, ʻoi aku ka maikaʻi o ka haʻi ʻana i kāu kauka e pili ana i nā lāʻau lapaʻau āpau āu e lawe ai, ʻaʻole wale nā ​​​​mea i kuhikuhi ʻia e kāu kauka, akā ʻo nā mea āu e kūʻai ai mai ka hale kūʻai lāʻau lapaʻau (nā lāʻau lapaʻau ʻaʻole i kauoha ʻia), nā lāʻau lapaʻau kuʻuna (nā mea kanu), nā huaora ( nā mea hoʻohui meaʻai). Eia kekahi, e haʻi i kāu kauka inā ʻoe e puhipaka, inu waiʻona, a hoʻohana paha i nā lāʻau lapaʻau ʻē aʻe. Hiki i kekahi mau mea ke launa pū me kāu lāʻau lapaʻau ma kekahi ʻano. ʻAʻole wehewehe kēia papa inoa i nā pilina āpau.

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

Ke hāʻawi ʻia kēia lāʻau lapaʻau iā ʻoe, ʻo Laronidase, e nānā pono ʻia kou kūlana e kāu mau kauka.ʻO ia hoʻi ke nānā mau nei lākou iā ʻoe.

He mea nui hoʻi e ʻike pinepine i kāu kauka e ʻike inā e hoʻomaikaʻi a ʻoi aku paha ka ʻino o kāu mau hōʻailona. Inā ʻaʻole e hoʻomaikaʻi ana kāu mau hōʻailona a i ʻole e ʻoi aku ka ʻino, e hōʻoia e haʻi i kāu kauka a i ʻole ke kauka lapaʻau.

"ʻO kekahi mea ʻē aʻe, no ka hoʻomaopopo maikaʻi ʻana i ka MPS I a me kāna mau lāʻau lapaʻau, aia kahi papa inoa kūikawā e hōʻiliʻili ana i ka ʻike o ka mea maʻi. E kamaʻilio me kāu kauka e pili ana i ka hoʻokomo ʻana i kou inoa ma kēia. He kōkua nui nō hoʻi ia no ka noiʻi e hiki mai ana i kēia maʻi."

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

E like me nā lāʻau lapaʻau āpau, hiki i kēia lāʻau pale Laronidase ke hana i nā hopena ʻaoʻao i kekahi poʻe. Akā, ʻaʻole loaʻa i nā kānaka a pau. Aia kekahi mau hopena ʻaoʻao e pono ʻoe e haʻi koke aku i kāu kauka inā ʻike ʻoe iā lākou. Aia kekahi mau mea ʻē aʻe ʻaʻole ia he mea weliweli loa. E nānā kākou i ke ʻano o lākou.

Nā hopena ʻaoʻao e pono ʻoe e hōʻike koke i kāu kauka :

"Inā ʻike ʻoe i kekahi o kēia mau hōʻailona, ​​​​pono ʻoe e haʻi i kāu kauka a i ʻole ke kauka olakino i ka hikiwawe loa:"

• Nā hopena alerika : ʻO kēia ka ʻili o ka ʻili, ka maneʻo a i ʻole ka hives, a me ka pehu ʻana o ka maka, nā lehelehe, a i ʻole ke alelo.
• Nā pilikia hanu .
• Nā loli i ka ʻike .
• ʻEha ka umauma .
• Kuke .
• Kuni .
• Ka pehu ʻana o nā wāwae a i ʻole nā ​​​​lima .
• ʻUlaʻula o ka maka a i ʻole ka ʻulaʻula .
• Ke koko haʻahaʻa .
• ʻEha, ʻūlū, maeʻele i nā lima a i ʻole nā ​​wāwae .
• ʻUlaʻula, ʻeha, a pehu paha ma kahi i hoʻopili ʻia ai .
• Melemele o nā maka a i ʻole ka ʻili - He pilikia paha kēia i ke akepaʻa.

Nā hopena ʻaoʻao ʻaʻole pono pinepine i ka ʻōlelo aʻoaʻo lapaʻau, akā pono e hōʻike i ke kauka inā hoʻomau lākou:

"Hiki ke hana ʻia kēia mau mea ma hope o ka loaʻa ʻana o ka lāʻau pale. ʻO ka hapa nui o ka manawa, ʻaʻole lākou he mea koʻikoʻi, akā inā hoʻomau lākou, a inā hoʻopilikia paha iā ʻoe, he manaʻo maikaʻi e haʻi aku i kāu kauka ."

• He ʻā iki a ʻeha paha ma kahi i hāʻawi ʻia ai ka inikini .

ʻAʻole kēia papa inoa nā hopena ʻaoʻao āpau. Inā ʻike ʻoe i kekahi mea ʻē aʻe i kūpono ʻole, e kamaʻilio me kāu kauka. Hiki iā ʻoe ke hōʻike i kēia mau hopena ʻaoʻao i ka FDA (Food and Drug Administration) ma 1-800-FDA-1088.

Ma hea ʻoe e mālama ai i kēia lāʻau lapaʻau?

ʻAʻole kēia he mea nui loa, no ka mea, ʻaʻole hiki iā ʻoe ke lawe i ka home i kēia lāʻau lapaʻau. Hāʻawi wale ʻia ia ma ka haukapila a i ʻole ke keʻena lapaʻau. No laila, ʻaʻole pono ʻoe e hopohopo e pili ana i ka mālama ʻana i ka lāʻau lapaʻau, na nā limahana lapaʻau e mālama i kēlā.

ʻO ka mea hope loa, ʻo ka mea nui loa

ʻAe, no laila ke lana nei koʻu manaʻo ua ʻike maikaʻi ʻoe i ka lāʻau pale Laronidase a mākou i kamaʻilio ai. E hoʻomanaʻo, he lāʻau lapaʻau kēia i hāʻawi ʻia ma lalo o ka nānā ʻana a ke kauka loea e kōkua i ka kaohi ʻana i nā hōʻailona o kahi maʻi laha ʻole i kapa ʻia ʻo MPS I.

"Inā ʻoe a i ʻole kāu keiki e loaʻa ana kēia lāʻau lapaʻau, e hahai pono i nā kuhikuhi a ke kauka e like me kāna e ʻōlelo ai iā ʻoe. Inā he mau nīnau a kānalua paha kāu, mai hūnā iā ʻoe iho. Aia lākou ma laila e kōkua iā ʻoe. ʻOiai ʻaʻole e hoʻōla loa kēia lāʻau i ka maʻi, e maʻalahi iki ke ola a hāʻawi iā ʻoe i ka ikaika e hakakā ai i nā hōʻailona. Mai hoʻokuʻu i ka manaʻolana! "

He hōʻuluʻulu manaʻo wale nō kēia pepa. ʻAʻole paha i loko nā ʻike āpau. Inā he mau nīnau hou aku kāu e pili ana i kēia lāʻau lapaʻau, e ʻoluʻolu e kamaʻilio me kāu kauka, kauka lāʻau, a i ʻole ka mea mālama ola kino.

ʻO Laronidase, MPS I, Mucopolysaccharidosis I, Hoʻōla ʻenzyme, Aldurazyme, Nā maʻi laha ʻole