Ke haʻi aku kāu kauka iā ʻoe ua loaʻa i kāu keiki kahi maʻi i kapa ʻia ʻo `PIK3CA-Related Overgrowth Spectrum`, a i ʻole `(PROS)` no ka pōkole, e manaʻo paha ʻoe i kahi haʻalulu nui a me ka makaʻu. ʻOiai ka lohe ʻana i kēia inoa hiki ke paʻakikī, ʻeā? Akā, mai hopohopo. ʻAʻole ʻoe hoʻokahi. Aia kahi hui holoʻokoʻa o nā kauka akamai a kūikawā e hiki ke kōkua iā ʻoe a me kāu keiki i loko o ia kūlana paʻakikī. I kēia lā, e kamaʻilio kākou e pili ana i ka poʻe ma kēia hui a pehea e hiki ai iā lākou ke kōkua i kāu keiki.
He aha maoli ka PROS? No ke aha e pono ai kēia i nā kauka loea he nui?
I ka ʻōlelo maʻalahi, ʻo PROS kahi maʻi genetic e hoʻoulu ai i nā cell i loko o ko mākou kino e ulu me ka ʻole o ke kāohi a me ka wikiwiki ma mua o ka maʻamau. Hoʻokumu ʻia ia e kahi mutation i loko o kahi gene i kapa ʻia ʻo PIK3CA. Hiki i kēia ke hana i nā ʻāpana like ʻole o ke kino, e like me ka ʻili, nā iwi, nā ʻiʻo momona, nā kīʻaha koko a i ʻole nā ʻōpū e like me ka lolo, e ulu nui aʻe ma mua o ka maʻamau. ʻOkoʻa loa ke ʻano mai kēlā kanaka a kēia kanaka. Loaʻa i kekahi mau keiki kēia mau hōʻailona i ka wā hānau. No kekahi poʻe, ʻike wale ʻia lākou i ka wā e ʻelemakule iki ai lākou. No kekahi mau keiki, hiki ke ʻoi aku ka ʻino o ke ʻano i ko lākou ʻelemakule ʻana, akā no kekahi poʻe, ʻaʻole ia e loli nui.
ʻAʻole he maʻi hoʻokahi ʻo PROS , akā he hōʻiliʻili o nā hōʻailona. ʻO ia ke kumu he paʻakikī i ke kauka hoʻokahi ke mālama iā ia. Pono nā kauka me ka ʻike kūikawā o kēlā me kēia ʻāpana o ke kino i hoʻopilikia ʻia e hana pū ma ke ʻano he hui.
E kamaʻilio pū lākou kekahi i kekahi a hana i ka hoʻolālā lapaʻau maikaʻi loa no kāu keiki. Ma kēia ʻano, hiki iā lākou ke nānā i ka pilikia mai nā kihi like ʻole, e hōʻoiaʻiʻo ana e loaʻa i kāu keiki ka hopena maikaʻi loa.
Nā loea e noho paha ma ka hui lapaʻau o kāu keiki
Ma muli o nā ʻāpana kino i hoʻopilikia ʻia e ke kūlana `PROS` o kāu keiki, pono paha ʻoe e ʻike i nā loea like ʻole. E nānā kākou iā lākou a pehea e hiki ai iā lākou ke kōkua ma ka papa ma lalo nei.
| Kauka loea | Pehea e hiki ai iaʻu ke kōkua? |
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| Kauka lapaʻau noʻonoʻo | He mea nui loa lākou inā he hopena i ka lolo o ke keiki, ke kaula kuamoʻo, a i ʻole ka ʻōnaehana nerve. Hoʻōla lākou i nā mea e like me ka maʻi epilepsy, nā pilikia sensory, a me nā pilikia neʻe. |
| Kauka Puʻuwai | Inā hoʻopilikia ka PROS i nā kīʻaha koko o ke keiki, pono ke kōkua o kahi kauka puʻuwai. Hiki iā lākou ke hoʻokele i kēia mau kūlana me nā lāʻau lapaʻau, ke ʻoki kino, a i ʻole nā lāʻau lapaʻau ʻē aʻe. |
| Kauka Nephrologist | He mea maʻamau nā pilikia puʻupaʻa i nā PROS. E hana lākou e kaohi i ke koko kiʻekiʻe, nānā i ka hana o nā puʻupaʻa, a kuhikuhi no ka dialysis a i ʻole ka hoʻoili puʻupaʻa inā pono. |
| Kauka niho | Hoʻōla lākou i nā kūlana e like me ka scoliosis, ka lōʻihi o nā wāwae ʻē, a me nā manamana lima lōʻihi ʻē inā he nui ka ulu ʻana o ke keiki i ko lākou ʻōnaehana iwi. |
| Kauka maka | Hiki ke hōʻino ʻia ka ʻike maka ma muli o ka ulu nui ʻana o nā ʻiʻo i loko o ka lolo a i ʻole a puni nā maka. E ʻike ke kauka maka i kēia mau mea a hāʻawi i ka lāʻau lapaʻau e pono ai. |
| Kauka Loea Pepeiao, Ihu a me ka Puʻu (Kauka ENT) | Inā nui ka ulu ʻana o nā ʻiʻo ma ka maka a i ʻole ka ʻāʻī, a inā paʻakikī ke ale ʻana, he mea nui ke kōkua o ke kauka ENT. |
| Kauka ʻili | I kekahi mau kūlana PROS, e like me ka maʻi CLOVES, ulu nui nā wahi o ka ʻili. Hiki i kēia ke melemele, ʻulaʻula, ʻāwili, a laumania paha. Hoʻokele ʻia kēia mau pilikia ʻili e ke kauka ʻili. |
| Kauka Lapaʻau Kūikawā | I kekahi manawa, ʻo ke ʻoki kino ka hopena maikaʻi loa. Hiki paha i kahi neurosurgeon e mālama i nā maʻi hopu, a i ʻole he kauka ʻoki thoracic e wehe i nā ʻiʻo momona mai ka umauma. |
| Nā mea hoʻōla ʻē aʻe | Inā pilikia ka lolo, pilikia paha ke keiki i ke aʻo ʻana, ka hana, ka ʻōlelo, a i ʻole ka neʻe ʻana. Hiki i nā mea hoʻōla noʻonoʻo , nā mea hoʻōla ʻōlelo , a me nā mea hoʻōla kino ke kōkua i ke keiki e lanakila ma luna o kēia mau pilikia. |
| Nā loea genetic a me ke kanesa | Hiki i nā PROS ke hoʻonui iki i ka pilikia o ka maʻi kanesa no ka mea e māhele wikiwiki ana nā pūnaewele. Kōkua nā loea genetic i ka hui lapaʻau e hoʻomaopopo i kēia pilikia. Mālama mau lākou i ke olakino o ke keiki. |
Pono anei kēia poʻe a pau e hui pinepine?
Aia nō ia i ke kūlana o kāu keiki. He mea nui e noho pili pono me kēia hui o nā loea a hiki i ka wā ʻōpio o kāu keiki. Hiki i
nā nānā mau ʻana ke kōkua i ka ʻike ʻana i nā pilikia e kū mai ana mai ka ulu nui ʻana o nā ʻiʻo. E nīnau maopopo i kāu kauka e pili ana i ke kauka āu e ʻike ai, pehea ka pinepine, a he aha nā pahuhopu o kēlā mau kipa.
Pehea ʻoe e loaʻa ai i kēia mau kauka loea?
ʻO ke ala maikaʻi loa e hana ai i kēia, ʻo ia
ke kamaʻilio me ke kauka maʻamau o kāu keiki . Hiki iā ia ke kuhikuhi iā ʻoe i nā loea kūpono. Eia kekahi, aia kekahi mau loea ma nā haukapila nui ma Sri Lanka, ʻoi aku hoʻi nā haukapila o nā keiki.
E hoʻomanaʻo, ʻo ka wikiwiki o kou launa pū ʻana me kēia hui o nā loea, ʻoi aku ka maikaʻi no ka wā e hiki mai ana o ke keiki.
Hiki ke paʻakikī kēia huakaʻi, akā me ke kākoʻo o ka hui lapaʻau kūpono, hiki iā ʻoe ke hāʻawi i kāu keiki i ka lāʻau lapaʻau a me ka mālama maikaʻi loa, e kōkua ana iā lākou e ola i ke ola maʻamau e like me ka hiki.
Leka Lawe-Home
- He maʻi hoʻoilina paʻakikī ʻo `PROS` e ulu nui ai nā ʻāpana o ke kino. No laila, mai makaʻu, e kiʻi i ka ʻike kūpono.
- Hoʻōla ʻia kēia e kahi hui o nā kauka loea . ʻAʻole pono ʻoe e kū hoʻokahi i kēia.
- Nā aʻalolo , ka puʻuwai,Pono paha ke keiki i ke kōkua o nā loea ma nā ʻano like ʻole e like me nā maʻi puʻupaʻa , nā iwi , a me nā maʻi ʻili .
- E kamaʻilio me kāu kauka ʻohana a e ʻimi i nā kuhikuhi i nā loea pono i ka hikiwawe loa. ʻO ka hoʻomaka koke ʻana o ka lāʻau lapaʻau, ʻoi aku ka maikaʻi o nā hopena.
- E hoʻomau i ka launa pū ʻana me ka hui lapaʻau a e makaʻala i ke kūlana o kāu keiki. Mai makaʻu e nīnau inā he mau nīnau kāu.
Maʻi PROS, PIK3CA, ulu ʻana o ke keiki, nā kauka loea, pediatrics, ulu nui ʻana o ke kino, nā maʻi genetic
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