Aia kekahi o kou ʻohana, a i ʻole kekahi āu i ʻike ai, he kīnā ʻike hānau? I kekahi manawa ua hoʻokumu ʻia kēia mau mea e nā maʻi genetic i hoʻoili ʻia mai kēlā hanauna a i kēia hanauna. I kēlā me kēia lā, hiki ke emi ka ʻike, a lilo i mea ʻike ʻole ʻia. No laila, i kēia lā e kamaʻilio mākou e pili ana i ka lāʻau lapaʻau hou loa a holomua loa e mālama ana i kēlā maʻi maka hoʻoilina kakaikahi. ʻO Voretigene Neparvovec kona inoa.
I ka ʻōlelo maʻalahi, he aha ʻo Voretigene Neparvovec?
ʻAʻole kēia he lāʻau lapaʻau e like me nā pila, nā capsules, a i ʻole nā mea ʻaila a mākou e hoʻohana mau ai. Ua kapa ʻia kēia ʻo Gene Therapy . ʻO LUXTURNA ka inoa inoa o kēia.
Hoʻohana ʻia kēia lāʻau lapaʻau e mālama i kahi hemahema ʻike hoʻoilina kikoʻī e hoʻopilikia ai i ka retina o ko mākou mau maka. ʻO ke kikoʻī, mālama ia i kahi pilikia ʻike i hoʻokumu ʻia e kahi kīnā i ka gene RPE65 i loko o ko mākou kino.
No laila, he aha kēia lāʻau lapaʻau gene?
E noʻonoʻo ʻoe aia kekahi puke nui me nā kuhikuhi no ke ʻano o ka hana ʻana o nā mea āpau i loko o ko kākou kino. ʻO kēia puke ko kākou mau genes . I kekahi manawa, ma kekahi ʻaoʻao o kēia puke, ʻo ia hoʻi, i loko o hoʻokahi gene, hiki ke loaʻa kahi hewa, kahi hewa. ʻO ka hewa i loko o ka gene i kapa ʻia ʻo RPE65 kekahi o ia mau mea.
ʻO kēia lāʻau lapaʻau, i kapa ʻia ʻo Voretigene Neparvovec, hoʻohana i kahi maʻi ʻino ʻole ma ke ʻano he mea lawe e hoʻokomo i kahi kope pololei o ka gene i loko o nā cell i loaʻa ka gene hewa. Ua like ia me ka hoʻololi ʻana i kahi ʻaoʻao me nā kuhikuhi hewa me kahi ʻaoʻao hou me nā kuhikuhi pololei. Ma hope o kēia, hiki i nā cell maka ke hana pono hou, a ma o kēia, hiki ke hoʻihoʻi ʻia ka ʻike i nalowale i kekahi ʻano a i ʻole e hoʻōki i ka nalowale hou ʻana o ka ʻike.
He lele nui maoli kēia i mua i ka ʻepekema lapaʻau. ʻO ia wale nō ka manaʻolana nui e loaʻa ana kahi lāʻau lapaʻau holomua no kahi maʻi i hiki ʻole ke ho'ōla ʻia ma mua.
Nā mea e pono ai ʻoe e haʻi i kāu kauka ma mua o ka hana ʻana i kēia lāʻau lapaʻau
No ka mea he lāʻau lapaʻau kūikawā loa kēia, he mea nui e ʻike kāu kauka i kou mōʻaukala olakino piha. E hōʻoia e haʻi iā ia e pili ana i kēia mau mea:
- Nā maʻi maka ʻē aʻe: ʻO nā maʻi maka ʻē aʻe a i ʻole nā pilikia ʻike āu i loaʻa mua (e like me ka cataracts, glaucoma).
- Nā maʻi ʻaleka: E ʻoluʻolu e haʻi mai iā mākou inā he maʻi ʻaleka kou i kēia lāʻau lapaʻau (voretigene neparvovec), kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, nā mea hoʻoluʻu, a i ʻole nā mea mālama.
- Ka hāpai ʻana a me ka hānai ʻana i ka waiū:Inā ʻoe e hāpai ana, e hoʻāʻo ana e hāpai, a e hānai waiū ana paha, e ʻoluʻolu e hoʻomaopopo i kāu kauka.
Pehea ʻoe e hoʻohana ai i kēia lāʻau lapaʻau?
ʻAʻole kēia he lāʻau lapaʻau home. He inikini kēia i loko o ka maka . Hana ʻia kēia e ke kauka ʻoki maka i aʻo kūikawā ʻia i loko o kahi ʻano maʻemaʻe a i kāohi ʻia, e like me ka lumi hana haukapila. No laila, ʻaʻohe mea e hopohopo ai, ua hōʻoia ʻia kou palekana i ka hiki.
Hiki ke hāʻawi ʻia kēia i nā keiki liʻiliʻi?
ʻAe. Hiki ke hāʻawi ʻia kēia lāʻau lapaʻau i nā keiki e like me hoʻokahi makahiki, ma lalo o nā kūlana kūpono. Eia nō naʻe, ʻo ka hoʻoholo hope loa e pili ana i ia mea na ke kauka pediatric a me ke kauka ʻoki maka e nānā ana i kāu keiki. Inā ʻoe e hāʻawi ana i kēia lāʻau lapaʻau i kahi keiki, he mea nui loa ia e kamaʻilio pono me ka hui lapaʻau e pili ana i ia mea a wehewehe i nā mea āpau.
He aha ka mea e hana ai inā lawe ʻoe i ka nui o ka lāʻau lapaʻau?
ʻOiai ua hāʻawi ʻia kēia ma kahi haukapila, ma lalo o ka nānā piha ʻana o nā kauka, ua haʻahaʻa loa ka hiki ke loaʻa kahi 'overdose'. Eia nō naʻe, inā he kānalua ua hana ʻia kēlā mea, e hana koke nā limahana o ka haukapila. ʻO ka maʻamau, ma ia hihia , ua hoʻomaopopo ʻia ke Kikowaena ʻIke Poisons Lahui ma ka Halemai Lahui ʻo Colombo a i ʻole ka Emergency Treatment Unit (ETU) kokoke loa.
Nā mea e noʻonoʻo ai i ka wā a ma hope o ka mālama ʻana
I ka wā a ma hope o ka mālama ʻana, e nānā pono nā kauka iā ʻoe. He kuleana nui nō hoʻi kāu.
Inā ʻike ʻoe i kekahi mau loli i kou ʻike - e like me ka emi ʻana o ka ʻike, ka ʻike pōwehiwehi, nā kiko ʻeleʻele e lana ana i mua o kou mau maka, ka hoʻonui ʻia o ka ʻike i ka mālamalama, a i ʻole ka ʻeha o ka maka a i ʻole ka ʻulaʻula - e haʻi koke i kāu kauka. He mea nui loa kēia.
He aha nā hopena ʻaoʻao e hiki mai ana?
E like me nā lāʻau lapaʻau āpau, aia kekahi mau hopena ʻaoʻao. E makaʻala pono i kēia mau mea.
| Nā hopena ʻaoʻao e pono e hōʻike koke ʻia i ke kauka | |
|---|---|
| Ka hopena ʻaoʻao | Wehewehena |
| Nā hopena alerika | ʻŌhūhū ʻili, maneʻo, pehu o ke kino, ʻoiai hoʻi o ka maka, nā lehelehe a i ʻole ke alelo. |
| Ke kahe ʻana o ke koko mai ka maka | Ke kahe ʻana o ke koko i loko a i waho paha o ka maka. |
| Nā loli o ka ʻike | ʻIke pōwehiwehi, ʻike ʻana i nā kiko ʻeleʻele a i ʻole nā ʻupena e lana ana i mua o nā maka, ʻike ʻana i nā kukui uila. |
| ʻEha maka | ʻEha mau a ʻeha nui paha o ka maka. |
| Hoʻonui ʻia ke kaomi o nā maka | Ke manaʻo nei i ke kaomi i loko o ka maka. E nānā ʻia kēia e ke kauka. |
| Kataract | ʻIke pōwehiwehi ma hope o ka lāʻau lapaʻau. |
ʻAʻole paha e komo pū kēia papa inoa me nā hopena ʻaoʻao āpau. Inā loaʻa iā ʻoe kekahi mau hōʻailona ʻē, e kamaʻilio me kāu kauka e pili ana iā lākou.
Leka Lawe-Home
- ʻO ka Voretigene neparvovec (LUXTURNA) kahi lāʻau lapaʻau gene kikoʻī no kahi maʻi maka hoʻoilina i hoʻokumu ʻia e kahi kīnā i ka gene RPE65.
- Hana ʻia kēia lāʻau lapaʻau ma kahi haukapila e ke kauka ʻoki maka loea, nāna e hoʻokomo i kahi inikini i loko o ka maka .
- Ma mua o ka mālama ʻana, e hāʻawi i ke kauka i ka wehewehe piha no kou mau kūlana olakino āpau, nā maʻi allergies, a inā paha ʻoe e hāpai ana.
- Ma hope o ka lāʻau lapaʻau, inā ʻike ʻoe i kekahi loli i ka ʻike, ka ʻeha maka, a i ʻole ka ʻulaʻula, e hoʻomaopopo koke i kāu kauka .
- ʻAʻole kēia he lāʻau lapaʻau no nā kānaka a pau. Inā kūpono kēia lāʻau lapaʻau iā ʻoe a ʻaʻole paha, e hoʻoholo ʻia ma hope o kahi hoʻokolokolo lapaʻau piha.
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