E noʻonoʻo ʻoe hoʻokahi wale nō ʻāpana o kou kino, e like me ka lima, ka wāwae, a i ʻole kahi ʻili, e ulu wikiwiki ana ma mua o ke koena. He ʻano maʻi laha ʻole kēia i hānau ʻia ai kekahi poʻe. Ma nā ʻōlelo lapaʻau, kapa mākou i kēia hui o nā maʻi ʻo PIK3CA-Related Overgrowth Spectrum, a i ʻole PROS no ka pōkole. He mea kēia e hoʻoulu maoli ai i nā pilikia he nui no ka mea nāna e ʻike, a me ka mea nāna e ʻike. I kēia lā, ma kēia ʻatikala, e kamaʻilio mākou e pili ana i ke ʻano o kēia PROS a e pili ana iā Vijoice, ka lāʻau lapaʻau mua i ʻae ʻia no kēia ʻano.
He aha maoli ka PROS?
I ka ʻōlelo maʻalahi, he maʻi hoʻoilina ʻo PROS. Loaʻa iā kākou āpau nā genes i loko o ko kākou kino e kāohi ana i ka ulu ʻana, ka māhele ʻana, a me ka make ʻana o nā cell. ʻO 'PIK3CA' kekahi gene koʻikoʻi. E noʻonoʻo i kēia gene me he 'switch' e kāohi ana i ka ulu ʻana o kā kākou mau cell.
Eia nō naʻe, i loko o ke kanaka me PROS, aia kahi kīnā, a i ʻole ka mutation, i loko o ka gene `PIK3CA`. ʻO kēia ke kumu o ka `switch` e paʻa ai i ke kūlana `on`. A laila hoʻomaka ka protein i nīnau ʻia e hana wikiwiki loa a nui loa. ʻO ka hopena, hoʻomaka kekahi mau ʻāpana o ke kino, no ka laʻana, ka ʻili, nā kīʻaha koko , nā iwi , a me ka lolo, e ulu me ka hiki ʻole ke kāohi.
ʻO ka mea nui, ʻaʻole pili ka PROS i kēlā me kēia ʻāpana o ke kino. Hiki ke ʻokoʻa mai kekahi ʻāpana o ke kino a i kekahi, a mai ke kanaka a i ke kanaka. No laila, ʻokoʻa loa nā hōʻailona.
A hiki i kēia manawa, ʻaʻohe lāʻau lapaʻau piha no PROS. Ua kālele ʻia nā lāʻau lapaʻau ma ka hoʻokele ʻana i nā hōʻailona. No ka laʻana, nā lāʻau lapaʻau no ka ʻeha, ka maneʻo, a me nā hopu ʻana, a me ke ʻoki ʻana e wehe i nā ulu ʻano ʻē. Eia nō naʻe, aia kahi pilikia o ka ulu hou ʻana o kēlā mau ulu ma hope o ke ʻoki ʻana.
Pehea e hana ai ka lāʻau lapaʻau ʻo Vijoice (alpelisib)?
ʻO kēia kahi e komo mai ai ka lāʻau ʻo Vijoice. ʻO Vijoice ka lāʻau mua e kuhikuhi i ke kumu nui o PROS, ka hyperactivity i hoʻokumu ʻia e ka mutation genetic.
ʻO ka mea hana nui i loko o kēia ʻo alpelisib . Hoʻohana maoli ʻia kēia lāʻau lapaʻau no kekahi mau ʻano maʻi ʻaʻai umauma . ʻO ke kumu o ia mea, ʻo iaUlu nā hunaola kanesa ma muli o ka hana nui o ke ala PIK3, e like me PROS.
No laila, ʻo ka mea a Vijoice e hana ai, ʻo ia ke ālai i ke ala PIK3, kahi e hana ai e like me ke 'switch' i paʻa i ke kūlana 'on'. Hoʻolohi kēia i ka ulu ʻana o nā cell ma ke ʻano maʻamau, hoʻemi i ka nui o nā ʻiʻo e ulu ana, a kāohi i nā hōʻailona.
He aha nā pono o kēia lāʻau lapaʻau?
Ua hōʻike nā haʻawina i hana ʻia ma kēia lāʻau lapaʻau (EPIK-P1 a me EPIK-P3) i nā pono koʻikoʻi no nā maʻi.
| Pōmaikaʻi | He wehewehe maʻalahi |
|---|---|
| Nā ulu liʻiliʻi (nā ʻeha) | Ua ʻike ʻia ua hoʻemi ʻia ka nui o nā puʻupuʻu momona (lipomas) a me nā malformations vascular i ka nui o ka poʻe i lawe i ka lāʻau lapaʻau ma 20% a ʻoi aku paha. |
| Hoʻemi ʻia ka pono no ke ʻoki kino | Ma kahi o 70% o nā keiki a me 90% o nā pākeke e lawe ana iā Vijoice ʻaʻole pono lākou i ke ʻoki kino. |
| Hoʻomaha i nā hōʻailona | Ua hōʻike mai nā maʻi i ka emi nui ʻana o nā hōʻailona e like me ka ʻeha, ka maneʻo, a me ka luhi. |
| Ka maʻalahi o nā hana o kēlā me kēia lā | Ma kahi o 81% o nā maʻi i komo i nā haʻawina i hōʻike ua hoʻomaikaʻi ʻia ko lākou hiki ke hana i nā hana o kēlā me kēia lā a me ke ʻano o ke ola i hoʻohālikelike ʻia ma mua o ka lāʻau lapaʻau. |
Mea nui: ʻAʻole like paha kēia mau hopena no kēlā me kēia kanaka. E kamaʻilio me kāu kauka e pili ana i ka kūpono o kēia lāʻau lapaʻau iā ʻoe a me nā pono a me nā pilikia.ʻOi aku ka maikaʻi o ke kamaʻilio ʻana me lākou a hoʻoholo.
He aha nā hopena ʻaoʻao maʻamau a pehea e mālama ai iā lākou?
E like me nā lāʻau lapaʻau āpau, hiki iā Vijoice ke hana i nā hopena ʻaoʻao . Eia nō naʻe, ʻo ka hapa nui o kēia mau mea he akahai a kaulike paha a hiki ke mālama ʻia.
| Ka hopena ʻaoʻao | Pehea e mālama ai a me nā mea e pono ai ke nānā aku |
|---|---|
| Ka maʻi pākī | E inu i nā wai he nui e like me ka wai a me ka wai huaʻai. Inā ʻike ʻoe i nā hōʻailona e like me ka maʻi kahe nui, ka ʻōpū ʻeha, a i ʻole ke koko a i ʻole ka mucus i loko o kou ʻōpala, e haʻi koke i kāu kauka . |
| Ka maloʻo ʻana | Hiki i ka maʻi kahe ke hoʻomaloʻo i ka wai. E makaʻala i nā hōʻailona e like me ka poniuniu nui, ka luhi, a me ka emi ʻana o ka mimi. Hiki i kēia ke hoʻopilikia i kou mau puʻupaʻa, no laila e haʻi koke i kāu kauka. |
| Nā ʻeha waha (Stomatitis) | Hiki ke loaʻa nā ʻeha a me ka ʻeha o ka waha. E pale i nā holoi waha me ka waiʻona. E holoi i kou waha me ka wai paʻakai mehana. E noho mamao mai nā meaʻai ʻala a ʻawaʻawa. |
| Hoʻonui ʻia ke kō koko (Hyperglycemia) | E nānā kāu kauka i kou pae kō koko ma mua o kou hoʻomaka ʻana e lawe i kēia lāʻau lapaʻau a i ka wā o kāu mālama ʻana. E haʻi i kāu kauka inā loaʻa iā ʻoe nā hōʻailona e like me ka makewai nui, ka mimi pinepine, a i ʻole ka luhi. Pono ka poʻe me ka maʻi diabetes e makaʻala loa i kēia. |
| Ka lahilahi o ka lauoho (Alopecia) | Hiki ke nalowale a lahilahi paha ka lauoho i ka wā o ka mālama ʻana. E hoʻohana i nā shampoos palupalu. E kamaʻilio me kāu kauka e pili ana i kēia. |
Hiki paha nā pilikia me nā lāʻau lapaʻau ʻē aʻe?
ʻAe. Hiki iā Vijoice ke launa pū me kekahi mau lāʻau lapaʻau ʻē aʻe. I ka ʻōlelo maʻalahi, hiki i kekahi mau lāʻau lapaʻau ke hōʻemi i ka pono o Vijoice. Hiki iā Vijoice ke hoʻololi i ka pono o kekahi mau lāʻau lapaʻau ʻē aʻe.
Eia kekahi laʻana, hiki i nā lāʻau lapaʻau e like me ka carbamazepine no ka maʻi epilepsy, rifampin no ka maʻi tuberculosis, a me nā huahana lāʻau e like me ka wort St. John ke hoʻopilikia i kēia.
No laila, ma mua o kou hoʻomaka ʻana i kēia lāʻau lapaʻau, he mea nui e haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau āpau āu e lawe nei (me nā huaora, nā huahana lāʻau lapaʻau, a me nā mea hoʻomaha ʻeha) i hiki iā ia ke hana i nā hoʻololi e pono ai.
Leka Lawe-Home
- He maʻi laha ʻole ka PROS kahi e ulu kūpono ʻole ai nā ʻāpana o ke kino ma muli o kahi mutation i loko o ka gene i kapa ʻia ʻo `PIK3CA`.
- ʻO Vijoice (alpelisib) ka lāʻau lapaʻau mua i ʻāpono ʻia e hoʻopaʻa i ke kaʻina hana kumu e hoʻoulu ai i kēia maʻi.
- Hiki i kēia ke kōkua i ka hoʻēmi ʻana i nā ulu kūpono ʻole, hoʻemi i ka pono no ke ʻoki ʻana, a hoʻomaikaʻi i ka maikaʻi o ke ola.
- Hiki ke loaʻa nā hopena ʻaoʻao e like me ka maʻi kahe, ke kiʻekiʻe o ke kō koko, a me nā ʻeha waha, a he mea nui loa ka mālama ʻana iā lākou a hoʻomaopopo i ke kauka.
- He mea nui e hoʻomaopopo i kāu kauka e pili ana i nā lāʻau lapaʻau ʻē aʻe āu e lawe nei. Mai hoʻomaka a hoʻōki paha i ka lawe ʻana i kekahi lāʻau lapaʻau me ka ʻole o ke aʻo ʻana a ke kauka.
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