I kēia lā, e kamaʻilio mākou e pili ana i kahi lāʻau lapaʻau paʻakikī iki, akā hou loa i lohe ʻole ʻia e ka poʻe he nui. ʻO Elivaldogene Autotemcel kona inoa. Ua kūʻai ʻia aku ma lalo o ka inoa ʻo SKYSONA. ʻAʻole kēia he pila a capsule maʻamau. He lāʻau lapaʻau kūikawā kēia no kahi maʻi neurological kakaʻikahi a koʻikoʻi hoʻi i kapa ʻia ʻo cerebral adrenoleukodystrophy (CALD). E wehewehe mākou i kēia lāʻau lapaʻau ma ke ʻano maʻalahi e hiki ai iā ʻoe ke hoʻomaopopo.
He aha ka mea e hana maoli me kēia lāʻau lapaʻau?
I mea e hoʻomaopopo ai i kēia, e lawe kākou i kahi laʻana liʻiliʻi. E noʻonoʻo i nā ʻaʻalolo i loko o ko kākou lolo a me ke kaula kuamoʻo e like me nā uea uila. Loaʻa i kēia mau uea uila kahi ʻūpā palakiko (insulation) a puni lākou, e kōkua ana i ka uila e holo mālie me ka ʻole o ka liki ʻana. Pēlā nō, loaʻa i ko kākou mau ʻaʻalolo kahi ʻūpā pale i kapa ʻia ʻo 'myelin' a puni lākou. ʻO kēia ʻūpā ka mea e hiki ai i nā leka aʻalolo ke holo wikiwiki a pololei.
I loko o kahi maʻi i kapa ʻia ʻo cerebral adrenoleukodystrophy (CALD), pale kahi kīnā genetic i ke kino mai ka hana ʻana i kahi protein e pono ai e mālama i kēia ʻūpā 'myelin'. A laila e luku mālie ʻia kēia ʻūpā pale, e hoʻopilikia ana i ka hana o ka ʻōnaehana nerve.
I ka ʻōlelo maʻalahi, ʻo kēia lāʻau lapaʻau, i kapa ʻia ʻo Elivaldogene Autotemcel, pili i ka lawe ʻana i nā ʻāpana mai ke kino ponoʻī o ka mea maʻi, hoʻololi i ke ʻano genetic iā lākou i loko o kahi lab, a hāʻawi iā lākou i ka hiki ke hana i ka protein i nalowale. A laila hoʻokomo hou ʻia nā ʻāpana i hoʻololi ʻia i loko o ke kino o ka mea maʻi. Ua kapa ʻia hoʻi kēia he gene therapy . Kōkua kēia i ka kaohi ʻana i ka ʻino o nā hōʻailona.
Nā mea e pono ai i kāu kauka ke ʻike ma mua o ka hoʻomaka ʻana i kēia lāʻau lapaʻau
No ka mea he lāʻau paʻakikī loa kēia, he mea nui e ʻike pono kāu hui lapaʻau i kou kūlana olakino. Ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau, pono ʻoe e haʻi i kāu kauka inā loaʻa iā ʻoe kekahi o kēia mau kūlana:
- Inā loaʻa iā ʻoe kekahi ʻano maʻi i kēia manawa (e like me ke kuni, ke anu, ka ʻūhā).
- Inā loaʻa iā ʻoe nā maʻi allergies i kēia lāʻau lapaʻau (elivaldogene autotemcel), nā lāʻau lapaʻau ʻē aʻe, nā meaʻai, nā dyes, a i ʻole nā mea mālama.
- Inā hāpai ʻoe a i ʻole e hoʻāʻo nei e hāpai .
- Inā ʻoe e hānai waiū ana i kāu pēpē .
Pehea e hāʻawi ʻia ai ka lāʻau lapaʻau?
ʻAʻole kēia he lāʻau lapaʻau home. Hāʻawi ʻia kēia lāʻau lapaʻau ma kahi haukapila a i ʻole keʻena lapaʻau kūikawā e kahi hui lapaʻau i aʻo ʻia.
Hoʻokomo ʻia kēia lāʻau lapaʻau i loko o ke kino e like me ka saline ma o kahi aa koko. Hana ʻia ke kaʻina holoʻokoʻa ma lalo o ka nānā pono ʻana o nā kauka a me nā kahu maʻi.
Ma mua o kāu lāʻau lapaʻau, e hāʻawi ʻia ʻoe i kahi pepa ʻike kūikawā i kapa ʻia ʻo MedGuide . Loaʻa iā ia ka nui o nā ʻike koʻikoʻi e pili ana i kēia lāʻau lapaʻau, ke kaʻina hana a me nā pilikia. He mea nui loa ia e heluhelu a hoʻomaopopo pono.
Hāʻawi ʻia kēia lāʻau lapaʻau i nā keiki ma luna o 4 mau makahiki, akā ua noʻonoʻo ʻia nā hana palekana a me nā pae hoʻohālikelike kūikawā.
He aha inā lawe nui ʻoe i ka lāʻau lapaʻau?
Ma muli o ka mālama ʻia ʻana o kēia ma lalo o ka nānā ʻana o ke kauka ma kahi haukapila, ua haʻahaʻa loa ka manawa e hiki ai kēia. Eia nō naʻe, inā he kānalua ua hana ʻia kēia, pono e hoʻomaopopo koke ʻia ke Kikowaena ʻIke Poisons Lahui ma ka Halemai Lahui ʻo Colombo a i ʻole ka Emergency Treatment Unit (ETU) o ka haukapila.
Nā mea e noʻonoʻo ai i ka wā a ma hope o ka mālama ʻana
Ma hope o ka loaʻa ʻana o kēia lāʻau lapaʻau, e nānā mau nā kauka i kou olakino. No kēia, pono ʻoe e mālama pono i kekahi mau mea.
- Hana Koko: Ma hope o ka lāʻau lapaʻau, pono ʻoe e hoʻāʻo ʻia kou koko ma kahi papa hana maʻamau. E nānā kēia inā e hana ana ka lāʻau lapaʻau, inā e hana pono ana nā ʻāpana hou, a inā he mau hopena ʻaoʻao.
- Ka pilikia o ka maʻi: Hiki i kēia lāʻau lapaʻau ke hoʻonāwaliwali i kou ʻōnaehana pale kino no kekahi manawa, kahi e hoʻonui ai i kou pilikia o ka maʻi. Inā loaʻa iā ʻoe nā hōʻailona e like me ke kuni, ke anu, ke kuni, a i ʻole ka ʻeha o ka puʻu , mai hoʻōla ponoʻī. E kelepona koke i kāu hui mālama ola . Eia kekahi, e hoʻāʻo e noho mamao aku mai ka poʻe maʻi i ka hiki.
- Ke hāʻawi koko ʻana: ʻAʻole hiki iā ʻoe ke hāʻawi koko ma hope o ka loaʻa ʻana o kēia lāʻau lapaʻau.
- Ka pilikia o ke kanesa: Me nā lāʻau lapaʻau gene hou e like me kēia, he liʻiliʻi loa ka pilikia o ka hoʻomohala ʻana i kekahi mau ʻano maʻi koko. Mai hopohopo i kēia, akā e wehe e pili ana i kēia pilikia a pehea e nānā ʻia ai me kāu kauka.
- ʻŌlelo aʻoaʻo kūikawā no nā kāne: Inā he kāne ʻoe e hana nei i kēia lāʻau lapaʻau, pono ʻoe e hoʻohana i ka condom i ka wā e moe ai me ka wahine i hiki ke hānau keiki. Pono e hahai ʻia kēia ʻano palekana no 6 mau mahina ma hope o ka lāʻau lapaʻau. Inā kānalua ʻoe ua hāpai kāu hoa i kēia manawa, e hoʻomaopopo koke i kāu kauka.
He aha nā hopena ʻaoʻao e hiki mai ana?
E like me nā lāʻau lapaʻau āpau, hiki i kēia lāʻau ke hana i nā hopena ʻaoʻao. Pono kekahi o lākou i ka mālama koke ʻana o ke kauka, aʻo kekahi he mea maʻamau paha.
| Ka hopena ʻaoʻao | Wehewehena / Nā Hōʻailona |
|---|---|
| Nā hopena ʻaoʻao koʻikoʻi e pono e hōʻike koke ʻia i ke kauka | |
| Nā hopena alerika | ʻŌhūhū ʻili, maneʻo, pehu o ka maka, nā lehelehe, ke alelo a i ʻole ka puʻu. |
| Ke kahe ʻana o ke koko | Koko i loko o ka ʻōpala a i ʻole nā ʻōpala ʻeleʻele, ka luaʻi e like me ke ʻano o ka lepo kofe, ka mimi ʻulaʻula a ʻeleʻele paha, nā kiko ʻulaʻula/poni liʻiliʻi ma ka ʻili, a me nā palapū māmā. |
| Maʻi | Kuni, anu, ʻū, ʻeha ka puʻu. |
| Nā hōʻailona o ka maʻi epilepsy (Seizures) | Loaʻa i ke ʻano e like me ke kūpilikiʻi ( hōʻā ). |
| Nā hopena ʻaoʻao ʻaʻole ia he mea weliweli, akā pono e hōʻike ʻia i ke kauka inā hoʻomau lākou | |
| Nā pilikia o ka ʻōnaehana hoʻoheheʻe | Paʻa ka ʻōpū, ʻeha ka ʻōpū, kahe ka wai, luaʻi, nausea. |
| Nā maʻi liʻiliʻi ʻē aʻe | Ka nalowale ʻana o ka makemake e ʻai, ka ʻeha poʻo, nā ʻeha waha a ʻāʻī paha a me ka ʻeha. |
ʻAʻole i hoʻokomo ʻia kēia papa inoa i nā hopena ʻaoʻao āpau. Eia kekahi, inā ʻike ʻoe i kekahi mau hōʻailona ʻē, e kamaʻilio me kāu kauka e pili ana iā lākou.
Leka Lawe-Home
- ʻO Elivaldogene Autotemcel (SKYSONA) kahi lāʻau lapaʻau gene kikoʻī loa no ka maʻi Cerebral Adrenoleukodystrophy (CALD).
- Hāʻawi ʻia kēia lāʻau lapaʻau ma kahi haukapila ma lalo o ka nānā ʻana a kahi hui o nā kauka loea.
- Ma mua o ka mālama ʻana, e hōʻoia e haʻi i kāu kauka i kāu ʻike olakino āpau (ʻoi aku hoʻi nā maʻi, nā allergies).
- E makaʻala loa i nā hōʻailona o ka maʻi a me ke kahe ʻana o ke koko ma hope o ka mālama ʻana. Inā he mau hopohopo kāu, e hoʻomaopopo koke i kāu kauka.
- Pono nā kāne e mālama ʻia ana e hoʻohana i ka condom i ka wā o ka moekolohe no ka manawa holoʻokoʻa o ka mālama ʻana.
- Mai makaʻu e kamaʻilio me kāu kauka e pili ana i nā nīnau a hopohopo paha āu e loaʻa ai.
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