Loaʻa i kāu keiki a ʻohana paha ka Spinal Muscular Atrophy, a i ʻole SMA no ka pōkole? Inā pēlā, ua haʻi aku paha kāu kauka iā ʻoe e pili ana i kahi lāʻau lapaʻau i kapa ʻia ʻo Risdiplam. Ke lohe ʻoe i kēia inoa, makaʻu iki paha ʻoe. Nui paha nā nīnau i loko o kou manaʻo, e like me, "He aha ke ʻano o kēia lāʻau lapaʻau, pehea e hāʻawi ʻia ai, he aha ka mea e hana ʻia?" E pane mākou i kēia mau nīnau a pau ma ke ʻano maʻalahi e hiki ai iā ʻoe ke hoʻomaopopo. E ʻike pono kākou i ke ʻano o kēia lāʻau lapaʻau.
I ka ʻōlelo maʻalahi, he aha ʻo Risdiplam?
ʻO Risdiplam (inoa inoa ʻo Evrysdi) kahi lāʻau lapaʻau i hoʻohana ʻia e mālama i kahi maʻi i kapa ʻia ʻo Spinal Muscular Atrophy (SMA). Loaʻa ia ma ke ʻano he hopena.
I kēia manawa, e nānā kākou i ke ʻano maoli o kēia. E noʻonoʻo e pono ana ko kākou mau ʻiʻo i kahi ʻano protein kūikawā e hana pono ai a mālama iā lākou i ka ikaika. I ke kanaka me SMA, ma muli o nā kumu genetic, hana iki ke kino i kēia protein. ʻO ia ke kumu e nāwaliwali mālie ai nā ʻiʻo a me ka atrophy.
No laila, hana maikaʻi kēia lāʻau Risdiplam . Kōkua ia i ko mākou kino e hana hou aku i kēlā protein kūikawā i nele. Ua like ia me kekahi e kōkua ana i kahi hale hana e holo pono hou i ka wā lohi iki. Ke hana nui ʻia kēia protein i loko o ke kino, kōkua ia e hoʻolohi i ka wikiwiki o ka nāwaliwali o nā ʻiʻo a kāohi i ka ʻino o nā hōʻailona.
Nā mea e pono ai ʻoe e haʻi i kāu kauka ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau
He mea nui loa e kamaʻilio ākea me kāu kauka ma mua o ka hāʻawi ʻana i kēia lāʻau lapaʻau iā ʻoe a i kāu keiki paha. Inā pili kekahi o kēia mau mea iā ʻoe, e ʻoluʻolu e haʻi aku.
| Nā mea e pono ai ʻoe e ʻike | No ke aha he mea nui kēlā? |
|---|---|
| Nā hopena alerika | E haʻi i kāu kauka inā loaʻa iā ʻoe kahi maʻi allergy (allergy) iā Risdiplam a i ʻole kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, a mea hoʻoluʻu paha. |
| Hāpai a i ʻole e hoʻāʻo ana e hāpai | Hiki i kēia lāʻau lapaʻau ke hoʻoulu i nā kīnā hānau koʻikoʻi i ka pēpē inā lawe ʻia i ka wā hāpai. No laila he mea nui loa e kamaʻilio e pili ana i kēia.. |
| Ka hānai ʻana i ka waiū umauma | Inā he makuahine hānai ʻoe, e hoʻomaopopo i kāu kauka. |
Pehea pololei kaʻu e hoʻohana ai i kēia lāʻau lapaʻau?
He hana kuleana kēia. Akā, mai hopohopo, e maʻa ʻoe iā ia ma hope o kekahi manawa. ʻOi aku ka maikaʻi o ka hāʻawi ʻana i ka lāʻau lapaʻau i ka manawa like i kēlā me kēia lā, e like me ke kauoha a ke kauka.
- Hoʻomākaukau: E holoi pono i kou mau lima me ke kopa ma mua o ka hoʻomākaukau ʻana i ka lāʻau lapaʻau a ma hope o ka hāʻawi ʻana.
- Ana pololei: E loaʻa iā ʻoe kahi syringe waha kūikawā me kēia lāʻau lapaʻau. E hoʻohana i ka syringe e ana i ka nui pololei a kāu kauka e haʻi aku ai iā ʻoe e lawe. Mai hoʻohana i kekahi puna a kīʻaha ʻē aʻe e ana.
- Ka lawelawe koke ʻana: Ma hope o ka huki ʻana i ka lāʻau lapaʻau i loko o ka syringe, pono e hāʻawi ʻia i ka mea maʻi i loko o 5 mau minuke . Mai waiho hou aku ma mua o kēlā.
- Ma mua a ma hope paha o ka ʻai?: Hiki ke hāʻawi ʻia kēia me ka ʻai a me ka ʻole o ka ʻai. Inā like me ka ʻōpū ʻeha, ʻoi aku ka maikaʻi o ka hāʻawi ʻana ma hope o ka ʻai ʻana. Inā ʻoe e hānai waiū ana, hiki iā ʻoe ke hāʻawi ma mua a ma hope paha o ka hānai waiū ʻana.
- Mai hoʻohuihui: Mai hoʻohuihui i kēia lāʻau lapaʻau me ka waiū waiū a i ʻole kekahi ʻano waiū ʻē aʻe.
- E hāʻawi i kahi wai: Ma hope o ka hāʻawi ʻana i ka lāʻau lapaʻau, e hāʻawi i ke kanaka i kahi wai e inu. E kōkua kēia iā mākou e hōʻoia ua ale ʻia nā lāʻau lapaʻau a pau.
- Inā pili ia i kou ʻili a i ʻole nā maka: Inā pili hewa ka lāʻau lapaʻau i kou ʻili, e holoi pono i ka wahi me ke kopa a me ka wai. Inā pili ia i kou mau maka, e holoi pono me ka wai wale nō.
E hoʻomau i ka lawe ʻana i kēia lāʻau a hiki i ka wā e ʻōlelo ai kāu kauka e hoʻōki. Mai hoʻōki a hoʻololi paha i ka lāʻau lapaʻau ma kāu iho.
Ke hāʻawi ʻia i nā keiki liʻiliʻi
I kekahi manawa, ua ʻōlelo ʻia kēia lāʻau lapaʻau no nā pēpē hānau hou. Eia nō naʻe, hiki i kāu kauka ke hoʻoholo i kēia. No laila, pono ʻoe e makaʻala loa i ka hāʻawi ʻana i nā keiki ʻōpio.
He aha kāu e hana ai inā e poina ʻoe i kahi mahele o ka lāʻau lapaʻau?
ʻAʻole mākou e hoʻomanaʻo mau i nā mea āpau. No laila hiki ke poina i ka hāʻawi ʻana i kahi mahele lāʻau. Inā hana ʻia kēlā, mai hopohopo.
E noʻonoʻo ʻoe ua manaʻo ʻia ʻoe e hāʻawi i ka lāʻau lapaʻau i ka hola 8 am. Ua poina iā ʻoe.
- Inā ʻaʻole i ʻoi aku ma mua o 6 mau hola i hala: Inā hoʻomanaʻo ʻoe ma mua o 2 pm (ʻo ia hoʻi, i loko o 6 mau hola o ka manawa i hoʻonohonoho ʻia), e lawe i ka mahele i hala i ka wā e hoʻomanaʻo ai ʻoe.
- Inā ʻoi aku ma mua o 6 mau hola i hala: Inā hoʻomanaʻo ʻoe ma hope o 2 pm, mai hele i kēlā manawa.E haʻalele loa iā ia a hāʻawi iā ia i ka manawa aʻe e like me ka mea i hoʻonohonoho ʻia ma ka hola 8 am o kekahi lā aʻe.
ʻO ka mea nui loa: Mai hāʻawi i ʻelua mahele lāʻau i ka manawa hoʻokahi a i ʻole e pāpālua i ka mahele no ka mea ua poina iā ʻoe e lawe no kekahi kumu. Inā luaʻi ke keiki ma hope o ka lawe ʻana i ka lāʻau a manaʻo paha ʻaʻole i ale loa ʻia, mai hāʻawi hou i ka lāʻau i ka manawa like. E hāʻawi i ka mahele aʻe i ka manawa i hoʻonohonoho ʻia i ka lā aʻe.
Hiki ke loaʻa nā pilina me nā lāʻau lapaʻau ʻē aʻe?
ʻAe, hiki i kekahi mau lāʻau lapaʻau ke launa pū me Risdiplam. ʻO ka mea nui i ʻike ʻia a hiki i kēia manawa ʻo ia ka lāʻau diabetes Metformin .
Akā, ʻaʻole i piha kēia papa inoa. No laila, ke hele ʻoe e ʻike i kāu kauka, e haʻi iā ia e pili ana i nā lāʻau lapaʻau a pau āu a kāu keiki e lawe nei. ʻO ia hoʻi,
- Nā lāʻau lapaʻau i kuhikuhi ʻia e nā kauka
- Nā lāʻau lapaʻau i hiki ke kūʻai ʻia ma ka hale kūʻai lāʻau lapaʻau me ke kauka ʻole
- Nā wikamina, nā mea hoʻohui meaʻai
- Lāʻau lapaʻau Sinhala, lāʻau lapaʻau Ayurvedic
- Inā ʻoe e puhipaka a inu waiʻona paha, e haʻi aku iā lākou.
A laila hiki i kāu kauka ke hoʻolālā palekana i ka lāʻau lapaʻau.
Nā mea kūikawā e makaʻala ai i ka wā e lawe ai i ka lāʻau lapaʻau
ʻO ka hāpai ʻana a me ka kaohi hānau
He mea nui loa kēia. Aia kahi pilikia kiʻekiʻe o nā kīnā hānau koʻikoʻi i loko o ka pēpē inā hāpai ʻoe i ka wā e lawe ana i kēia lāʻau lapaʻau.
- Ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau, pono ʻoe e lawe i kahi hoʻāʻo hāpai e hōʻoia ʻaʻole ʻoe hāpai.
- Pono ʻoe e hoʻohana i kahi ʻano kaohi hānau kūpono loa i ka manawa a pau āu e lawe ai i ka pila a no hoʻokahi mahina ma hope o ka hoʻōki ʻana i ka pila.
- E kamaʻilio ākea me kāu kauka e pili ana i ke ʻano kaohi hānau kūpono iā ʻoe.
Ka hānau keiki ʻana
Aia kekahi hopohopo e pili ana paha kēia lāʻau lapaʻau i ka momona. Inā he mau hopohopo kou e pili ana i ka loaʻa ʻana o nā keiki i ka wā e hiki mai ana, mai kānalua e kamaʻilio me kāu kauka e pili ana i ia mea.
He aha nā hopena ʻaoʻao e hiki ke loaʻa mai ka lāʻau lapaʻau?
E like me nā lāʻau lapaʻau āpau, hiki i kēia lāʻau lapaʻau ke hana i kekahi mau hopena ʻaoʻao. Eia naʻe, ʻaʻole loaʻa i nā kānaka a pau. Hōʻike maopopo ka papa ma lalo nei i kēia mau mea.
| ʻAno o ka hopena ʻaoʻao | Nā hiʻohiʻona i manaʻo ʻia |
|---|---|
| Nā mea e hoʻomaopopo koke aku i kāu kauka | |
| Nā hopena aleri koʻikoʻi | ʻŌhūhū ʻili, maneʻo nui, pehu ʻana o ka maka, nā lehelehe, ke alelo a i ʻole ka puʻu (hiki ke pilikia i ka hanu ʻana). |
| Inā hoʻomau a hoʻopilikia paha, e haʻi i kāu kauka. | |
| Nā hopena ʻaoʻao maʻamau |
|
ʻAʻole paha e komo pū kēia papa inoa me nā hopena ʻaoʻao āpau. Inā ʻike ʻoe i kekahi mea ʻē aʻe ma waho aʻe o kēia mau mea, e haʻi i kāu kauka.
Pehea e mālama ai i ka lāʻau lapaʻau?
He mea nui hoʻi e mālama pono i kēia lāʻau.
- ʻO ke ala maikaʻi loa: ʻOi aku ka maikaʻi o ka mālama ʻana i loko o ka pahu hau. Akā, ʻaʻole loa i loko o ka pahu hau. Mai hoʻokuʻu iā ia e hau. E mālama i loko o ka ʻōmole kumu i hoʻokomo ʻia ai, mai ka mālamalama aku.
- Ka manawa mālama: Pono e hoʻohana ʻia ka lāʻau lapaʻau i loko o 64 mau lā mai ka lā i kāwili ʻia ai a hāʻawi ʻia e ka hale kūʻai lāʻau lapaʻau. Ma hope o kēlā, e hoʻolei i nā lāʻau lapaʻau i koe.
- Mahana o ka lumi: I kahi pilikia, e like me ka wā e hele ana, hiki iā ʻoe ke mālama iā ia ma ka mahana o ka lumi (ma lalo o 40 degere Celsius) a hiki i 5 mau lā. ʻAʻole pono kēlā mau lā 5 e like me ka lālani. No ka laʻana, ua waiho ʻoe iā ia no hoʻokahi lā i kēia lā, hoʻihoʻi i loko o ka friji, waiho i waho no kekahi lā ʻē aʻe i hoʻokahi pule ma hope... Ma hope o ka pau ʻana o nā lā 5, ʻaʻole hiki iā ʻoe ke waiho hou i waho.
- E mālama ʻia mai nā keiki: E like me nā lāʻau lapaʻau a pau, e mālama i kēia mai ka hiki ʻana aku o nā keiki liʻiliʻi a me nā holoholona.
Pehea ʻoe e hoʻolei aku ai i nā lāʻau lapaʻau i koe?
Mai hoʻolei wale i nā lāʻau lapaʻau i pau ka manawa a i ʻole nā lāʻau lapaʻau i makemake ʻole ʻia i loko o ka ʻōpala a hoʻolei paha iā lākou i loko o ka lua. E noi i kāu kauka no ka ʻōlelo aʻo.
Leka Lawe-Home
- He lāʻau lapaʻau kūikawā ʻo Risdiplam i hoʻohana ʻia e kāohi i ka nāwaliwali o nā ʻiʻo i hoʻokumu ʻia e ka Spinal Muscular Atrophy (SMA).
- E hoʻohana mau i ka syringe kūikawā e hele mai me ka lāʻau lapaʻau a hāʻawi i ka nui kikoʻī a ke kauka e haʻi aku ai iā ʻoe.
- Inā ʻoe e poina i kahi lāʻau lapaʻau, e hōʻalo iā ia inā ʻoi aku ma mua o 6 mau hola i hala a lawe i kāu lāʻau lapaʻau aʻe i ka manawa i hoʻonohonoho ʻia. Mai pāpālua i ka lāʻau lapaʻau.
- E haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau ʻē aʻe, nā huaora, a me nā lāʻau Sinhala āu e lawe nei.
- Mai hāpai i ka wā e lawe ana i kēia lāʻau lapaʻau a no hoʻokahi mahina ma hope o ka hoʻōki ʻana. He mea nui e hoʻohana i kahi ʻano kaohi hānau kūpono.
- Inā kānalua ʻoe ua lawe hewa ʻoe i ka lāʻau lapaʻau nui ʻole, e kāhea koke aku i ke Kikowaena ʻIke ʻAi Poisons ma ka Halemai Lahui ʻo Colombo , a i ʻole e hele i ka Emergency Treatment Unit (ETU) o ka haukapila kokoke loa.
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