He hopena i ka maʻi genetic e hoʻoulu ai i ka mae a me ka ʻeha ma nā lālā - E aʻo kākou e pili ana i ka Patisiran Injection

Ke manaʻo pinepine nei ʻoe i ka mae ʻana, ka ʻūlū ʻana, a i ʻole ke kuni ʻana i kou mau lima a me kou mau wāwae? Ke manaʻo nei ʻoe i kekahi manawa e mae ana kēia mau wahi? ʻOiai ke ʻano maʻamau kēia mau hōʻailona, ​​i kekahi manawa aia kekahi kumu koʻikoʻi ma hope o lākou. I kēia lā, ke kamaʻilio nei mākou e pili ana i kahi lāʻau lapaʻau i hoʻokomo ʻia ma o kahi aʻa a hoʻohana ʻia e mālama i ia ʻano maʻi. ʻO ia ʻo Patisiran.

He aha kēia Patisiran? He aha ke ʻano o ia mea?

I ka ʻōlelo maʻalahi, he lāʻau pale ʻo Patisiran. Hoʻohana ʻia ia e mālama i nā pilikia neurological i ka poʻe me kahi maʻi genetic i kapa ʻia ʻo hereditary transthyretin-mediated amyloidosis (hATTR) .

I kēia manawa, ke noʻonoʻo nei paha ʻoe i ke ʻano o ka hATTR. He mea maʻalahi loa ia. Loaʻa iā kākou āpau nā protein i loko o ko kākou kino. I nā poʻe me kēia kūlana hATTR, he protein i kapa ʻia ʻo transthyretin e pelu hewa ana, e ʻākoakoa pū ana, a waiho ʻia e like me ka mush. Loaʻa kēia waihona a puni nā aʻalolo, ka puʻuwai, a me nā kino ʻē aʻe. Ke hana ʻia kēia, hoʻomaka kēlā mau kino, ʻoiai nā aʻalolo, e hōʻino ʻia. ʻO ia ke kumu e ʻike ʻia ai nā hōʻailona i ʻōlelo ʻia ma mua, e like me ka mae ʻole, ka ʻeha, a me ka mumū ma nā lālā.

Hana ka lāʻau ʻo Patisiran ma ka hōʻemi ʻana i ka hana ʻana o kēlā protein i pelu hewa ʻia. ʻO ia hoʻi, ke komo kēia lāʻau i ke kino, kāohi ia i ka hana ʻana o kēlā protein ʻino. A laila, emi iho ka hōʻiliʻili ʻana o kēlā protein a puni nā aʻalolo, a kāohi mālie ʻia nā hōʻailona. Loaʻa kēia lāʻau ma ka mākeke ma lalo o ka inoa ʻo ONPATTRO .

Nā mea e pono ai ʻoe e haʻi i kāu kauka ma mua o ka lawe ʻana i kēia lāʻau lapaʻau

No ka mea he lāʻau lapaʻau kūikawā kēia, he mea nui loa ia e hoʻomaopopo i kāu kauka e pili ana i kou kūlana olakino piha ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau. E hōʻoia e haʻi iā lākou e pili ana i kēia mau mea:

• Nā maʻi ʻaleka: Inā loaʻa iā ʻoe kekahi mau maʻi ʻaleka, ʻaʻole wale i ka Patisiran, akā i kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, a mea hoʻomalu paha, e ʻoluʻolu e haʻi mai iā mākou e pili ana iā lākou.
• Hāpai: Inā hāpai ʻoe, e hoʻāʻo ana e hāpai, a manaʻo paha ua hāpai ʻoe, e haʻi i kāu kauka ma mua o ka hoʻomaka ʻana i ka lāʻau.
• Inā he makuahine hānai ʻoe: Inā he makuahine hānai ʻoe, pono ʻoe e hoʻomaopopo i ke kauka.

Ma muli o kēia ʻike, e hoʻoholo ke kauka inā kūpono kēia lāʻau iā ʻoe a ʻaʻole paha a pehea e hoʻomau ai.

Pehea e hāʻawi ʻia ai kēia lāʻau lapaʻau iā ʻoe?

ʻAʻole kēia he lāʻau lapaʻau hiki iā ʻoe ke lawe i ka home. He infusion intravenous ʻo Patisiran. No laila, hāʻawi wale ʻia ia ma kahi haukapila a i ʻole ke keʻena lapaʻau, ma lalo o ka nānā ʻana o nā limahana lapaʻau i aʻo ʻia.

ʻO ka maʻamau, hāʻawi ʻia kēia lāʻau lapaʻau i hoʻokahi manawa i kēlā me kēia ʻekolu pule. Ma kahi o hoʻokahi hola a me ka hapa ka lōʻihi e hoʻokomo ai i ka lāʻau lapaʻau i loko o ke kino.

He aha inā lawe nui wau i ka lāʻau lapaʻau?

Hāʻawi ʻia kēia ma kahi haukapila no laila ua haʻahaʻa loa ka manawa e hiki ai kēia. Eia nō naʻe, inā manaʻo ʻoe ua hana ʻia kekahi mea, e hōʻike koke iā ia i ke Kikowaena ʻIke Poisons National ma ka Halemai Lahui a i ʻole ka Emergency Treatment Unit (ETU) ma ka haukapila kokoke loa.

Nā mea e hoʻomanaʻo ai i ka wā e lawe ai i ka lāʻau lapaʻau

He mea nui loa ka mālama pono ʻana i kou kino i ka wā o ka mālama ʻana.

• Nā Hana Hoʻokomo: Loaʻa paha i kekahi poʻe nā hopena i ka wā e hāʻawi ʻia ai kēia lāʻau i loko o kahi aa a i ʻole ma hope koke iho o ka hāʻawi ʻia ʻana. No ka laʻana, ʻeha ka umauma, ka paʻakikī o ka hanu ʻana, a i ʻole ka manaʻo poniuniu. No ka hōʻemi ʻana i kēia pilikia, hiki i kāu kauka ke hāʻawi iā ʻoe i nā lāʻau lapaʻau ʻē aʻe (e like me ka lāʻau allergy) ma mua o kou loaʻa ʻana i ka inikini Patisiran. No laila e hahai pono i nā ʻōlelo a kāu kauka. E nānā pono nā limahana lapaʻau iā ʻoe i ka wā e hāʻawi ʻia ai ka lāʻau.
• Nā pae wikamina A: Hiki i ka Patisiran ke hoʻemi i nā pae wikamina A i loko o ke kino. He mea nui ka wikamina A no ko kākou ʻike maka, ke olakino o ka ʻili, a me ka pale ʻana i ka maʻi. No laila, e ʻōlelo paha kāu kauka e lawe ʻoe i kahi papa wikamina A i kēlā me kēia lā. He mea nui loa ia e lawe pololei e like me ke kauoha. Eia kekahi, e kamaʻilio me kāu kauka e pili ana i nā meaʻai waiwai i ka wikamina A (kāloti, ʻuala, sipinaki, waiū).
• Nā loli i ka ʻike: Inā ʻike ʻoe i kekahi mau loli i kou ʻike, e like me nā maka maloʻo, e haʻi koke i kāu kauka, no ka mea, he hōʻailona paha kēia o ka nele o ka huaora A.
• Nā nānā maʻamau: E nānā mau kāu kauka iā ʻoe e ʻike inā e hoʻomaikaʻi ana kāu mau hōʻailona a i ʻole. E hōʻoia e hele pinepine i kēia mau nānā.

Nā hopena ʻaoʻao e hiki mai ana ma muli o kēia lāʻau lapaʻau

E like me nā lāʻau lapaʻau āpau, hiki iā Patisiran ke hana i kekahi mau hopena ʻaoʻao. ʻOiai ʻaʻole loaʻa i nā kānaka a pau, he koʻikoʻi kekahi a he mea maʻamau kekahi.

ʻAʻole i hoʻokomo ʻia kēia papa inoa i nā hopena ʻaoʻao āpau. Inā loaʻa iā ʻoe kekahi mau hōʻailona ʻē aʻe, e kamaʻilio me kāu kauka e pili ana iā lākou.