I kekahi manawa, he mea kākaʻikahi loa kekahi mau maʻi i loaʻa i kā mākou mau keiki. A he kūikawā loa hoʻi nā lāʻau lapaʻau no lākou. I kēia lā, e kamaʻilio mākou e pili ana i kahi lāʻau pale kūikawā i hāʻawi ʻia no ia mau maʻi ʻōnaehana pale kakaʻikahi a koʻikoʻi. ʻO Pegademase Bovine kona inoa. Ua haʻi aku paha kāu kauka iā ʻoe e pili ana i kēia lāʻau. No laila, e hoʻopau kākou i ka makaʻu a me ke kānalua e pili ana i kēia a e hoʻomaopopo wale i kēia mau mea.
He aha kēia lāʻau lapaʻau i kapa ʻia ʻo Pegademase Bovine?
I ka ʻōlelo maʻalahi, ʻo Pegademase Bovine kahi lawelawe kūwaho o kahi enzyme i hana maoli ʻia i loko o ko mākou kino, akā nalo i kekahi poʻe. E noʻonoʻo i ko mākou kino e like me kahi hale hana nui. Pono kēia hale hana i nā ʻano limahana like ʻole (enzymes) e hana pono ai. I kekahi manawa, ma muli o nā kumu genetic, hiki i kekahi o kēia mau limahana ke hele ʻole mai ka hānau ʻana.
ʻO ka mea i nele ma ʻaneʻi he enzyme i kapa ʻia ʻo Adenosine Deaminase (ADA) . He mea nui kēia enzyme no ka hana pono ʻana o kā mākou ʻōnaehana pale. Ke nele, lilo ka ʻōnaehana pale i nāwaliwali loa. Ua kapa ʻia ke kūlana ʻo Severe Combined Immunodeficiency Disease (SCID) .
No laila, ʻo ka hana a kēia lāʻau pale Pegademase Bovine, ʻo ia ka hāʻawi ʻana i ke kino i kēlā enzyme ADA i nalowale. He mana hoʻololi kēia o kahi enzyme i lawe ʻia mai nā bipi wahine.
He mea nui loa: ʻAʻole kēia he lāʻau lapaʻau no ka maʻi. Eia nō naʻe, kōkua ia i ka kaohi ʻana i nā hōʻailona, kōkua i ka ʻōnaehana pale e hana i kāna hana, a ʻae iā ʻoe e ola i kahi ola maʻamau.
Nā mea e haʻi aku i kāu kauka ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau
Ma mua o ka hoʻomaka ʻana i kēia lāʻau lapaʻau, he mea nui e hāʻawi i ke kauka i kahi wehewehe piha no ke kūlana olakino o kāu keiki a i ʻole ke kūlana olakino o kāu keiki. E hōʻoia e haʻi iā lākou e pili ana i kēia mau mea.
| ʻIke e hōʻike ʻia | I ka ʻōlelo maʻalahi... |
|---|---|
| Nā pilikia koko | Inā maʻalahi ʻoe e palapū, a inā ʻaʻole e pau ke kahe ʻana o ke koko mai kahi ʻeha liʻiliʻi. |
| Ka emi ʻana o nā platelets koko | Inā hōʻike kāu mau hoʻokolohua koko i ka helu platelet haʻahaʻa. |
| Nā maʻi o kēia manawa | Inā loaʻa iā ʻoe kekahi maʻi e like me ke kuni, ka ʻū, a i ʻole ke anu i kēia manawa. |
| Nā maʻi ʻaleka | Inā he maʻi ʻoe i kēia lāʻau lapaʻau Pegademase Bovine, nā lāʻau lapaʻau ʻē aʻe, nā meaʻai, nā mea mālama, a i ʻole nā mea hoʻoluʻu. |
| 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. |
Pehea e hoʻohana ʻia ai kēia lāʻau pale?
He inikini kēia i loko o kahi ʻiʻo . Hāʻawi pinepine ʻia kēia e kekahi loea mālama ola ma kahi haukapila a i ʻole ke keʻena lapaʻau. Eia nō naʻe, i kekahi mau hihia, e kuhikuhi ʻia ʻoe e hāʻawi iā ʻoe iho i kēia inikini ma ka home. Inā pēlā, e hahai pono i nā kuhikuhi e like me kā lākou e ʻōlelo ai iā ʻoe, me ka hoʻololi ʻole i hoʻokahi leka . He mea nui loa ka lawe ʻana i ka lāʻau lapaʻau i ka manawa i kuhikuhi ʻia.
Ka ʻike kūikawā e pili ana i nā nila a me nā syringe
Inā ʻoe e hāʻawi ana i ka lāʻau pale ma ka home, pono ʻoe e makaʻala loa me nā nila a me nā syringe āu e hoʻohana ai.
- Mai hoʻolei i nā nila i hoʻohana ʻia i loko o ka ʻōpala.
- Aia kekahi pahu ʻoi kūikawā kahi e hiki ai ke hoʻolei aku i kēia mau mea.
- Inā ʻaʻohe āu, e kamaʻilio me kāu kauka a nīnau pehea e loaʻa ai.
I ka manawa hea e hāʻawi ʻia ai i nā keiki?
Aia kekahi mau hihia kahi e hāʻawi ʻia ai kēia lāʻau lapaʻau i nā pēpē hānau hou. Eia nō naʻe, pono e mālama pono i ka hāʻawi ʻana i kēia i nā keiki. No laila, e kamaʻilio pono me kāu kauka lapaʻau e pili ana i ka hāʻawi ʻana i kēia lāʻau i kāu keiki a wehewehe i nā mea āpau.
He aha inā lawe nui wau i ka lāʻau lapaʻau?
Inā manaʻo ʻoe ua lawe nui ʻoe i kēia lāʻau lapaʻau, e hele koke i ka Halemai Pilikia (ETU) kokoke loa . A i ʻole, e kelepona i ke Kikowaena ʻIke ʻAi ʻona Lahui ma ka Halemai Lahui ʻo Colombo .
He aha nā hopena ʻaoʻao e pono ai ʻoe e makaʻala?
E like me nā lāʻau lapaʻau āpau, hiki i kēia ke loaʻa nā hopena ʻaoʻao. Pono e hōʻike koke ʻia kekahi o lākou, aʻo kekahi he mea maʻamau. E nānā kākou iā lākou.
| Ka hoʻokaʻawale ʻana o nā hopena ʻaoʻao | |
|---|---|
| Nā mea e haʻi koke aku i kāu kauka | |
| Nā hopena maʻi ʻaleka | ʻŌhūhū ʻili, maneʻo, hives, pehu o ka maka, lehelehe, a i ʻole ke alelo. |
| Paʻakikī ka hanu ʻana | Manaʻo e like me ka paʻakikī e hanu. |
| Pōʻino a me ka nalowale o ka ʻike | Pōniuniu, maka polū, maule, a hāʻule paha. |
| Ka nāwaliwali maʻamau ʻole | Manaʻo luhi loa a nāwaliwali paha me ke kumu ʻole. |
| Nā mea i maʻa mau ʻole i ka nui, akā pono e hōʻike ʻia i ke kauka inā hoʻomau lākou | |
| ʻEha poʻo | He ʻeha poʻo maʻamau. |
| ʻEha ma kahi i hoʻokomo ʻia | ʻEha a ʻulaʻula paha ma kahi i inikini ʻia. |
Inā ʻike ʻoe i kekahi mea ʻē aʻe i ʻōlelo ʻole ʻia ma kēia papa inoa, e kamaʻilio pū me kāu kauka e pili ana i ia mea.
Kekahi mau mea nui ʻē aʻe
- He aha inā e hala wau i kahi lāʻau lapaʻau? He mea nui loa ia ʻaʻole e hala kahi lāʻau lapaʻau. Inā ʻoe e hele ana i kahi keʻena lapaʻau e lawe i kāu lāʻau lapaʻau, e kāhea mua i kāu kauka inā ʻaʻole hiki iā ʻoe ke hele. Inā ʻoe e lawe ana i kāu lāʻau lapaʻau ma ka home, e kāhea koke i kāu kauka inā e hala ʻoe i kahi lāʻau. Mai lawe pālua i ka manawa hoʻokahi.
- Nā pilina me nā lāʻau lapaʻau ʻē aʻe: Hiki i kekahi mau lāʻau lapaʻau, e like me Vidarabine , ke launa pū me kēia lāʻau pale. No laila, e haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau āpau āu e lawe nei (me nā huaora, nā lāʻau lapaʻau lāʻau, a me nā mea hoʻohui). Eia kekahi, e haʻi i kāu kauka inā ʻoe e puhipaka a inu waiʻona paha.
- Ka Mālama ʻana: Inā ʻoe e mālama nei i kēia lāʻau lapaʻau ma ka home, e mālama iā ia i loko o ka friji ma kahi mahana ma waena o 2 a me 8 degere Celsius . Mai hoʻokomo i loko o ka pahu hau. Eia kekahi, e mālama iā ia mai ka hiki ʻana aku o nā keiki. E hoʻolei aku i nā lāʻau lapaʻau i pau ka lāʻau.
Ma loko o ke kaʻina hana o kēia lāʻau lapaʻau, he mea nui e hele i nā hoʻokolohua ma nā lā i hoʻonohonoho ʻia e like me ka ʻōlelo a ke kauka. Pono nō hoʻi ʻoe e hana i nā hoʻāʻo koko maʻamau e nānā i ka hana o kāu ʻōnaehana pale.
Leka Lawe-Home
- He lāʻau lapaʻau pani enzyme ʻo Pegademase Bovine no kahi maʻi pale ʻōpilikia laha ʻole i kapa ʻia ʻo SCID. ʻAʻole ia he lāʻau lapaʻau, akā he kaohi.
- Ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau, e haʻi i kāu kauka e pili ana i kou mōʻaukala olakino piha, nā lāʻau lapaʻau ʻē aʻe āu e lawe nei, a me nā maʻi allergies āu e loaʻa ai.
- Mai hōʻalo i nā lāʻau lapaʻau. Inā ʻoe e poina i kahi lāʻau lapaʻau, e kāhea koke i kāu kauka . Mai lawe i kahi lāʻau lapaʻau pālua.
- Inā loaʻa iā ʻoe nā hopena ʻino e like me ka paʻakikī o ka hanu ʻana a i ʻole ka pehu ʻana o ka maka, e ʻimi koke i ke kōkua lapaʻau.
- E mālama pono i ka lāʻau lapaʻau i loko o ka pahu hau. Mai waiho i loko o ka pahu hau.
- E hoʻolei pono i nā nila a me nā syringe i hoʻohana ʻia i loko o kahi pahu kūikawā.
💬 Comments (0)
ʻAʻohe manaʻo i kau ʻia. Hoʻohui i kāu manaʻo ma ʻaneʻi no ka manawa mua.
Hoʻohui i kāu manaʻo