Loaʻa i kāu keiki ka SMA? E aʻo kākou e pili ana i ka lāʻau pale ʻo Nusinersen (Spinraza)

Ke haʻi ʻia aku kāu keiki a i ʻole kekahi lālā o ka ʻohana e ke kauka he maʻi ko lākou i kapa ʻia ʻo Spinal Muscular Atrophy (SMA), pehea ke kaumaha a me ka weliweli ... He kumuhana koʻikoʻi loa ia. Akā, mai hopohopo. I kēia lā, ua holomua nui ka ʻepekema lapaʻau. Aia nā lāʻau lapaʻau hou e hiki ke kōkua i ka hakakā ʻana i kēia mau kūlana a hoʻomaʻalahi i ke ola. ʻO kekahi o ia ʻano lāʻau lapaʻau kikoʻī a holomua ʻo Nusinersen. Ua lohe paha ʻoe iā ia ma lalo o ka inoa inoa ʻo Spinraza. No laila, i kēia lā, e kamaʻilio maʻalahi a me ke akahai e pili ana i kēia lāʻau lapaʻau, pehea e hāʻawi ʻia ai, a me nā mea āu e pono ai e ʻike.

I ka ʻōlelo maʻalahi, he aha ʻo Nusinersen?

He lāʻau lapaʻau kūikawā ʻo Nusinersen i hana kūikawā ʻia no ka mālama ʻana i ka Spinal Muscular Atrophy (SMA). He maʻi hoʻoilina ka SMA. Ma kēia, e nāwaliwali mālie nā hunaola aʻalolo (nā neuron motor) e hoʻomalu ana i ko kākou mau ʻiʻo. A laila e pau ka hana pono ʻana o nā ʻiʻo.

ʻO kēia kahi e komo mai ai ʻo Nusinersen. Kōkua kēia lāʻau i ko mākou kino e hana i kahi protein koʻikoʻi i kapa ʻia ʻo SMN (Survival of Motor Neuron). Mālama kēia protein i nā hunaola nerve e hoʻomalu ana i nā ʻiʻo i ke olakino.

Nā mea e pono ai ʻoe e haʻi i kāu kauka ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau

Ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau ʻo Nusinersen, he mea nui e hāʻawi i kāu kauka i kahi wehewehe piha no ke kūlana olakino o kāu a i ʻole ke kūlana olakino o kāu keiki. E hōʻoia e hoʻomaopopo iā lākou i kēia mau mea:

Pehea e hāʻawi ʻia ai kēia lāʻau i ke kino?

ʻAʻole kēia he lāʻau lapaʻau home. He lāʻau pale ʻo Nusinersen i hāʻawi ʻia e kekahi loea ma kahi haukapila a i ʻole keʻena lapaʻau.

ʻAʻole kēia e like me ka pana āu e hāʻawi mau ai ma ka lima a i ʻole ka puʻupuʻu. Hāʻawi ʻia ia i loko o ke kahe a puni ke kaula iwi kuamoʻo, ma ke kolamu iwi kuamoʻo. I ka pololei, ua kapa ʻia kēia he inikini intrathecal . Hana ʻia kēia kaʻina hana e kahi hui o nā kauka i aʻo ʻia a ʻike.

Hiki ke hāʻawi ʻia kēia lāʻau lapaʻau i nā poʻe maʻi SMA o kēlā me kēia makahiki, mai nā keiki hānau hou a i nā pākeke. Eia nō naʻe, na kāu kauka e hoʻoholo ma hope o ka nānā pono ʻana i ke kūlana o ka mea maʻi.

He aha kāu e hana ai inā e hala ʻoe i kahi manawa lapaʻau?

Hāʻawi ʻia kēia lāʻau lapaʻau ma kahi papa manawa kikoʻī. No laila , he mea nui loa ka hele ʻana i ka haukapila i ka lā i hoʻonohonoho ʻia e loaʻa ai ka lāʻau lapaʻau. Inā no kekahi kumu pilikia ʻaʻole hiki iā ʻoe ke hele i ka lā i hoʻonohonoho ʻia, e kelepona koke i kāu kauka a i ʻole ka haukapila a e haʻi iā lākou. E aʻo aku lākou iā ʻoe i ka mea e hana ai.

Aia kekahi mau hopena ʻaoʻao?

E like me nā lāʻau lapaʻau āpau, hiki ke loaʻa kekahi mau hopena ʻaoʻao i ka wā e mālama ʻia ai me Nusinersen. He mea liʻiliʻi kekahi o kēia mau mea, aʻo nā mea ʻē aʻe e pono ai ka nānā kūikawā.

Inā loaʻa iā ʻoe kekahi mau hōʻailona ʻē aʻe i helu ʻole ʻia ma ʻaneʻi, e kamaʻilio me kāu kauka e pili ana iā lākou. Inā manaʻo ʻoe he lāʻau make ia, hiki iā ʻoe ke kelepona i ke Kikowaena ʻIke Lahui no nā Poisons ma ka Halemai Lahui ʻo Colombo .

Ke launa pū nei me nā lāʻau lapaʻau ʻē aʻe?

ʻAʻohe hōʻike o nā lāʻau ʻē aʻe e hoʻoulu ai i nā pilina koʻikoʻi me Nusinersen. Eia nō naʻe, no ka palekana, e haʻi i kāu kauka e pili ana i nā mea āpau āu e lawe nei.

• Nā lāʻau lapaʻau no nā maʻi ʻē aʻe
• Nā lāʻau lapaʻau ʻole i kauoha ʻia
• Nā huaora, nā mea kanu, a i ʻole nā ​​​​mea hoʻohui meaʻai
• Eia kekahi, e hoʻomaopopo i ke kauka e pili ana i ka puhipaka a me ka hoʻohana ʻana i ka waiʻona.

E nānā mau ana kāu kauka i kou kūlana i loko o kāu mālama ʻana. Pono nō hoʻi ʻoe e hana i ka hana koko i nā manawa maʻamau e nānā i kāu hana puʻupaʻa a me ka helu platelet. He mea nui loa ia ʻaʻole e haʻalele i kēia mau hoʻokolohua.