Ua ʻike anei ʻoe ua ʻoi aku ka lōʻihi o kekahi o nā wāwae o kāu keiki ma mua o kekahi? A i ʻole ke ʻano nui aʻe nei kekahi ʻaoʻao o ko lākou helehelena ma mua o kekahi? I kekahi manawa he mea maʻamau kēia mau mea. Eia nō naʻe, loaʻa paha i kekahi mau keiki kahi maʻi kakaikahi kahi i nui loa ai nā ʻāpana o ko lākou kino. I kēia lā ke kamaʻilio nei mākou e pili ana i nā PONO o ia ʻano. Mai makaʻu e ʻike i kēia, ʻo ka mea nui loa ka hoʻomaopopo ʻana.
I ka ʻōlelo maʻalahi, he aha kēia mau PROS?
He mea paʻakikī iki paha ke kani ʻana o PROS. ʻO kona inoa piha ʻo
PIK3CA-Related Overgrowth Spectrum . I ka ʻōlelo maʻalahi, ʻaʻole he maʻi hoʻokahi ʻo PROS. He hui ia o nā kūlana pili ʻole e ulu nui ai nā ʻāpana o ke kino a i ʻole ke ʻano ʻē. E like me ka nui o nā kala i ke ānuenue, he nui nā kūlana like ʻole ma lalo o ka malu PROS. ʻO ka mea like o kēia mau kūlana a pau, ʻo ia ke kumu o ka mutation i loko o kahi gene i kapa ʻia ʻo 'PIK3CA' i loko o ke kino.
ʻAʻole kēia he hewa o kekahi . He loli genetic maʻamau kēia e hana ʻia ma hope o ka hāpai ʻia ʻana o ke pēpē i loko o ka ʻōpū.
ʻO ka mea nui, ʻokoʻa kēlā me kēia kanaka me PROS . ʻAʻole like paha nā hōʻailona o kekahi keiki me kekahi. No laila, kū hoʻokahi ke kūlana o kāu keiki.
Aia kekahi mau ʻano maʻamau i ʻike pinepine ʻia ma nā kūlana PROS. E nānā kākou i ke ʻano o lākou.
| Hōʻailona | He wehewehe maʻalahi |
|---|
| Ka hoʻonui ʻana o nā ʻāpana o ke kino | Ka hoʻonui ʻano ʻē ʻana o kekahi a ʻoi aku paha o nā ʻāpana o ke kino, e like me ka lima, ka wāwae, a i ʻole ka manamana lima. |
| Nā loli o ka lolo | Loaʻa i kekahi mau keiki kahi lolo i hoʻonui ʻia a i ʻole ka hapalua o ka lolo. |
| Nā puʻupuʻu momona | ʻO ke kūkulu ʻia ʻana o nā puʻupuʻu momona ma nā wahi like ʻole o ke kino, ʻoi aku hoʻi ma nā wahi e like me ka ʻōpū. |
| Nā loli i nā iwi | Nā kūlana e like me nā deformities iwi a me ka scoliosis. |
| Nā loli ma nā manamana lima | Nā manamana lima a me nā manamana wāwae lōʻihi ʻē aʻe, hoʻonui ʻia, a hui paha. |
| Nā kiko ʻili | Nā kiko ʻeleʻele ma ka ʻili a i ʻole nā wahi ʻāʻī ma kekahi mau wahi. |
| Nā pilikia o ke kīʻaha koko | ʻO ka ulu ʻana o nā kīʻaha koko ma ke ʻano kūpono ʻole (vascular malformations), hiki ke hoʻonui i ka pilikia o nā ʻūpā koko. |
| Nā hiʻohiʻona ʻē aʻe | Haʻahaʻa ke kani o nā ʻiʻo, nā hopu ʻana, a me nā lohi i ke aʻo ʻana a i ʻole ka ulu ʻana o ka noʻonoʻo. |
Nā ʻano like ʻole o PROS a me ko lākou mau hiʻohiʻona
Hoʻokaʻawale nā kauka i nā kūlana PROS ma muli o nā hōʻailona e hōʻike ana ke keiki. E nānā kākou i kekahi o nā ʻano nui a me ko lākou mau ʻano.
ʻO ka maʻi CLOVES
Hiki i nā keiki me kēia maʻi ke loaʻa nā loli o ke kīʻaha koko e ʻike ʻia e like me nā kiko ʻeleʻele ma ka ʻili a me nā manamana lima ʻē i ka wā hānau.
Nā hōʻailona ʻē aʻe o ka maʻi CLOVES
| Nā nati momona | Ka hoʻokumu ʻia ʻana o nā puʻupuʻu i hana ʻia i ka momona i loko o ke kino. |
| Nā loli ʻili | Nā kiko ʻili a i ʻole nā mea ulu ʻili. |
| Nā loli iwi | Nā kūlana e like me ka scoliosis. |
| Nā loli i nā lālā | Nā manamana lima i hoʻonui ʻia, ka ulu ʻana o nā lālā asymmetrical. |
| Nā pilikia puʻupaʻa | Ua nalowale a liʻiliʻi paha kekahi puʻupaʻa. |
Hoʻopilikia kēia maʻi i ka lolo a me nā ʻāpana ʻē aʻe o ke kino. Nui nā keiki me MCAP i hānau ʻia me ke poʻo nui loa. Hiki i ke poʻo ke ulu koke i ka makahiki mua o ke ola.
Nā hōʻailona o ka maʻi MCAP
| Hoʻonui ʻia ka lolo | Ka hoʻonui ʻia ʻana o ka lolo holoʻokoʻa a i ʻole ka hapalua o ka lolo. |
| Nā loli o ka helehelena | Nā papālina piha a me nā lehelehe. |
| ʻOle ke kala ʻili | Nā loli i ke ʻano o ka ʻili (ʻoi aku hoʻi ma ka maka) ma muli o nā loli i loko o nā kīʻaha koko liʻiliʻi (capillaries). |
| Nāwaliwali o nā ʻiʻo | Ua emi ka ʻoʻoleʻa o nā ʻiʻo o ke kino. |
| Nā hiʻohiʻona ʻē aʻe | Nā ʻōʻō, nā kīnā noʻonoʻo, ka lohi o ka ʻōlelo, ke kalapu ʻana a i ʻole ka loaʻa ʻana o nā manamana lima keu, ke kulou nui ʻana o nā hono, a me nā loli o ka puʻuwai. |
ʻO ka Hemimegalencephaly
Hoʻopilikia nui kēia maʻi i hoʻokahi ʻaoʻao o ka lolo. Hiki ke hana hoʻokahi a i ʻole me nā maʻi ʻē aʻe.
Nā hōʻailona nui: nā loli ma kekahi ʻaoʻao o ka lolo, ke poʻo nui a kūlike ʻole, nā huʻa , ka maʻi lolo hapa ma kekahi ʻaoʻao o ke kino, a me nā lohi o ka ulu ʻana.
ʻO ka Lipomatosis Infiltrating Maka
ʻO ke ʻano nui o kēia, ʻo ia ka ʻoi aku o kekahi ʻaoʻao o ka maka ma mua o kekahi.
Nā hōʻailona ʻē aʻe: nā puʻupuʻu ʻaʻole cancerous e hana ʻia i loko o nā ʻiʻo nerve (ʻoi aku hoʻi ma ke alelo a i ʻole nā lehelehe), ke alelo i hoʻonui ʻia, nā iwi maka i hoʻonui ʻia, a me ka puka mua ʻana o nā niho mau loa.
Pehea e mālama ai i kēia kūlana?
Hiki i nā PROS ke lilo i mea ʻino aʻe i ka hala ʻana o ka manawa. Ma muli o nā ʻāpana o ke kino i hoʻopilikia ʻia, hiki i kāu keiki ke paʻakikī i ka hele wāwae a me ka hana ʻana i nā hana o kēlā me kēia lā. Akā
ʻo ka nūhou maikaʻi , aia nā lāʻau lapaʻau e hiki ke kōkua i ka mālama ʻana i ke kūlana a hoʻomaʻalahi i ke ola o kāu keiki. ʻAʻole kēia he mea āu e hana ai me ʻoe wale nō. He mea nui e hana pū me
ke kauka o kāu keiki a me nā loea ʻē aʻe (no ka laʻana, he loea orthopedic, he neurologist) e kūkākūkā a hoʻomaopopo i nā koho lapaʻau maikaʻi loa no kāu keiki. I kekahi manawa, hiki ke mālama ʻia nā hōʻailona ma o nā mea e like me ke ʻoki kino, ka lāʻau lapaʻau, a i ʻole ka physiotherapy.
Leka Lawe-Home
- ʻAʻole he maʻi hoʻokahi ʻo PROS, akā he hōʻiliʻili o kekahi mau maʻi laha ʻole kahi e ulu kūpono ʻole ai nā ʻāpana o ke kino.
- Hiki mai kēia maʻi ma muli o kahi loli genetic, ʻaʻole ma muli o kekahi hewa o nā mākua.
- He ʻokoʻa kēlā me kēia keiki me PROS. Hiki ke ʻokoʻa loa nā hōʻailona mai kekahi keiki a i kekahi.
- Inā ʻike ʻoe i kekahi ʻano like ʻole, ulu kūpono ʻole, a i ʻole nā hiʻohiʻona kānalua ʻē aʻe ma kekahi ʻāpana o ke kino o kāu keiki, e kamaʻilio koke me kāu kauka .
- ʻOiai ʻaʻole hiki ke ho'ōla loa ʻia kēia maʻi, aia nā lāʻau lapaʻau e hiki ke kōkua i ka kaohi ʻana i nā hōʻailona a hoʻomaikaʻi i ke ʻano o ke ola o ke keiki.
NĀ PONO, PIK3CA, maʻi ulu nui, maʻi CLOVES, MCAP, pediatrics, nā maʻi genetic
💬 Comments (0)
ʻAʻohe manaʻo i kau ʻia. Hoʻohui i kāu manaʻo ma ʻaneʻi no ka manawa mua.
Hoʻohui i kāu manaʻo