E aʻo kākou e pili ana i ka lāʻau Evrysdi no ka Spinal Muscular Atrophy (SMA)

Ua lohe anei ʻoe i kahi maʻi i loko o kou ʻohana, ʻoiai he keiki liʻiliʻi, kahi e nāwaliwali mālie ai nā ʻiʻo o ka iwi kuamoʻo? Ma ke ʻano lapaʻau, kapa mākou i kēia he Spinal Muscular Atrophy (SMA) . Ma Sinhala, he degeneration ia o nā ʻiʻo e pili ana i ka iwi kuamoʻo. He maʻi genetic kēia i hoʻoili ʻia mai kēlā hanauna a kēia hanauna. ʻO ia ke kumu e hiki ai i kēia nāwaliwali o nā ʻiʻo ke hoʻopilikia ʻaʻole wale i nā hana a mākou e hana mau ai i kēlā me kēia lā, e like me ke kau ʻana i ko mākou poʻo i luna, ka noho ʻana me ke kōkua ʻole, ka hele wāwae ʻana, ka moni ʻana i ka meaʻai, akā ʻo ka hanu ʻana hoʻi. No laila, ʻo kahi lāʻau lapaʻau waha hou i hāʻawi ʻia ma ke ʻano he lāʻau lapaʻau no kēia maʻi SMA ua kapa ʻia ʻo Evrysdi (risdiplam) . I kēia lā, e kamaʻilio mākou e pili ana i kēia lāʻau lapaʻau, pehea e hoʻohana ai, he aha kona mau pono, a he aha nā hopena ʻaoʻao āu e ʻike ai.

He hoʻolauna pōkole i ka maʻi SMA a me kona mau ʻano like ʻole

Ma mua o ko kākou kamaʻilio ʻana e pili ana i ka lāʻau lapaʻau ʻo Evrysdi, e hoʻomaopopo iki kākou e pili ana iā SMA. Ua māhele ʻia ka maʻi i kekahi mau ʻano nui e pili ana i ka makahiki e hoʻomaka ai nā hōʻailona e ʻike ʻia.

• SMA hoʻomaka pēpē (ʻAno 1): ʻO kēia ke ʻano koʻikoʻi loa. ʻIke pinepine ʻia nā hōʻailona i ka wā kamaliʻi, ma mua o 6 mahina.
• SMA hoʻomaka ma hope (ʻAno 2 a me 3): I kēia ʻano, hoʻomaka nā hōʻailona e ʻike ʻia i ka wā kamaliʻi a i ʻole ka wā ʻōpio.
• SMA hoʻomaka pākeke (ʻAno 4): I kēia hihia, ʻike wale ʻia nā hōʻailona ma hope o ka wā makua.

Hoʻohana ʻia ka lāʻau lapaʻau ʻo Evrysdi e mālama i kēia mau ʻano āpau. Hāʻawi ʻia nō hoʻi i ka poʻe i ʻike ʻia me SMA ma o ka hoʻāʻo ʻana i ka genetic akā ʻaʻole i hōʻike ʻia nā hōʻailona (pre-symptomatic).

Pehea e hoʻohana ai i ka lāʻau lapaʻau ʻo Evrysdi?

He ʻāpana koʻikoʻi loa kēia, no ka mea, ʻo ka hoʻohana pono ʻana i ka lāʻau lapaʻau e hoʻopilikia pololei i nā hopena .

E loaʻa iā ʻoe kēia lāʻau lapaʻau mai kahi hale kūʻai lāʻau kūikawā, ma ke ʻano wai. Inā loaʻa iā ʻoe kahi ʻōmole e like me ka pauka, mai kāwili a inu. Inā hana ʻia kēia, e kelepona koke i kahi i hāʻawi ʻia ai ka lāʻau lapaʻau iā ʻoe a i ʻole kāu kauka.

Pehea e hoʻomākaukau ai i ka lāʻau lapaʻau

E haʻi pololei aku kāu kauka iā ʻoe i ka nui e lawe ai a pehea e ana ai a hoʻomākaukau ai. Pono e hele mai ka ʻōmole lāʻau me kahi pāpale, kahi mea hoʻololi ʻōmole, a me kekahi mau syringe hiki ke hoʻohana hou ʻia. Inā nalowale a haki paha kekahi o kēia mau mea, e kamaʻilio me kāu kauka ma mua o ka lawe ʻana i ka lāʻau.

• He mea nui e lawe i ka lāʻau lapaʻau i ka manawa like i kēlā me kēia lā .
• ʻO ka manawa kūpono loa e lawe ai i ka lāʻau lapaʻau ma hope o ka ʻai ʻana . Inā he pēpē,E hāʻawi ma hope o kou pau ʻana i ka hānai waiū .
• Mai hoʻohuihui i kēia lāʻau lapaʻau me ka waiū waiū a i ʻole kekahi ʻano waiū ʻē aʻe, e like me ka waiū bipi.
• Ma hope o ka lawe ʻana i ka lāʻau lapaʻau, e inu i kahi wai e hōʻoia ai ua moni loa ʻia.
• Hāʻawi ʻia kēia lāʻau lapaʻau i kekahi poʻe ma o kahi ʻōmole hānai . I kēlā hihia, pono paha ʻoe e holoi i ka ʻōmole me ka wai ma hope o ka hāʻawi ʻana i ka lāʻau.

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

Ma hope o ka huki ʻana i ka nui o ka lāʻau lapaʻau i loko o ka syringe, pono ʻoe e inu i loko o 5 mau minuke . Inā ʻaʻole hiki iā ʻoe ke inu i loko o ia manawa, e hoʻolei i ka nui a hoʻomākaukau i kahi nui hou.

Eia kekahi, mai hoʻokuʻu i kēia lāʻau lapaʻau ma kou ʻili a i ʻole i kou mau maka. Inā loaʻa ia ma kou ʻili, e holoi pono me ke kopa a me ka wai. Inā loaʻa ia i kou mau maka, e holoi pono i kou mau maka me ka wai maʻemaʻe. Mai hoʻohuihui i ʻelua ʻōmole lāʻau lapaʻau no hoʻokahi mahele lāʻau no kekahi kumu.

Pehea i hoʻāʻo ʻia ai ka holomua o kēia lāʻau lapaʻau?

Ma mua o ka hiki ʻana mai o kekahi lāʻau lapaʻau i ka mākeke, ua hana ʻia nā noiʻi lapaʻau he nui e ʻike ai i kona pono a me ka palekana. Ua hala pū kekahi mau hoʻāʻo like ʻana o ka lāʻau lapaʻau ʻo Evrysdi. E nānā maʻalahi kākou iā ia.

He aha nā hopena ʻaoʻao o Evrysdi?

E like me nā lāʻau lapaʻau āpau, hiki iā Evrysdi ke hana i kekahi mau hopena ʻaoʻao liʻiliʻi. ʻO nā mea maʻamau:

• kuni
• Ka maʻi pākī
• ʻŌhūhū ʻili a i ʻole ka maneʻo

ʻO kēia nā hopena ʻaoʻao maʻamau, akā aia kekahi mau hopena ʻaoʻao ʻē aʻe.

He aha e hana ai inā loaʻa nā hopena ʻaoʻao?

I nā hihia e like me ke kuni, hiki iā ʻoe ke kamaʻilio me kāu kauka a loaʻa i kahi mahele kūpono o ka paracetamol.

Inā he ʻōpū palupalu kou, ʻo ka mea nui e pale aku i ka maloʻo ʻana o ka wai.

• E hāʻawi iā lākou i nā wai he nui e inu ai.
• Inā he pēpē, e hānai pinepine i ka waiū.
• He mea maikaʻi loa ka hāʻawi ʻana i nā keiki ʻōpio i kahi mea inu e like me Jeevani (wai hoʻōla wai waha) .
• E inu i ka wai nui.

Palekana anei ʻo Evrysdi i ka wā hāpai a me ka wā hānai?

He mea nui loa kēia.

• Inā hāpai ʻoe, e hoʻolālā ana e hāpai, a i ʻole e hānai waiū ana, e ʻōlelo pono i kāu kauka ma mua o ka hoʻomaka ʻana iā Evrysdi.
• ʻO ka manaʻo o kēia manawa, he mea ʻino paha ka lāʻau ʻo Evrysdi i ka pēpē i loko o ka ʻōpū.
• No laila, ma mua o ka hoʻomaka ʻana i kēia 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 wā e lawe ana i ka pila a no hoʻokahi mahina ma hope o ka hoʻōki ʻana i ka pila.

E ʻoluʻolu e kūkākūkā i kāu kauka i kekahi mau nīnau a hopohopo paha e pili ana i kēia.