Lawe mai kahi pēpē hānau hou i ka hauʻoli nui i kahi ʻohana. Akā i ka manawa like, he mea maʻamau iā ʻoe, ma ke ʻano he makuahine a he makuakāne paha, ke loaʻa i kekahi mau makaʻu a me nā kānalua. I kekahi manawa, hānau ʻia kahi keiki me kahi maʻi laha ʻole a mākou i lohe ʻole ai. He mea paʻakikī ke hōʻike i nā huaʻōlelo i ko mākou manaʻo i ia manawa. I kēia lā e kamaʻilio mākou e pili ana i kekahi ʻano maʻi laha ʻole, ʻo Fraser Syndrome.
ʻO ka mea mua, e nānā kākou, he aha kēia maʻi hoʻoilina?
I ka ʻōlelo maʻalahi, ua hoʻomalu ʻia nā mea āpau i loko o ko kākou kino e ko kākou mau genes. ʻO nā mea e like me ke kala o ko kākou lauoho, ke kala o nā maka, a me ke kiʻekiʻe ua hoʻoholo ʻia e kēia mau genes. I kekahi manawa, hiki ke hana ʻia kekahi mau loli, a i ʻole nā mutations, i loko o kēia mau genes. ʻO ia ka manawa e hana ʻia ai nā maʻi genetic. Hiki ke ʻike ʻia kekahi o kēia mau mea i ka wā hānau, aʻo kekahi e ʻike ʻia ma hope.
He ʻano like a laha ʻole ka maʻi Fraser syndrome. Loaʻa ia i ka wā mua o ka ulu ʻana o ke keiki i loko o ka ʻōpū. Hoʻopilikia ia i kahi poʻe liʻiliʻi loa ma ka honua. Hiki ke loaʻa i nā kāne a me nā wahine.
He aha nā hōʻailona o kahi keiki me ka Fraser Syndrome?
Hiki ke ʻokoʻa nā hōʻailona o kēia maʻi mai kekahi keiki a i kekahi. ʻO ke ʻano kēia, ʻaʻole e hōʻike nā keiki āpau i nā hōʻailona like. Eia nō naʻe, aia kekahi mau hōʻailona nui a me nā hōʻailona ʻē aʻe i ʻike pinepine ʻia.
ʻO ka mea nui loa, pono i ke kauka ke nānā i ke keiki e ʻike i kēia maʻi. Mai lele koke i nā hopena ma muli o nā hōʻailona i ʻōlelo ʻia ma ʻaneʻi.
Hōʻike ka papa ma lalo nei i kekahi o nā hōʻailona maʻamau i ʻike ʻia ma kēia ʻano.
| ʻĀpana kino | Nā hiʻohiʻona i ʻike ʻia |
|---|---|
| Nā maka |
|
| Nā lima a me nā wāwae |
|
| nā puʻupaʻa |
|
| ʻŌnaehana hānau (Genitals) |
|
| Nā hiʻohiʻona ʻē aʻe |
|
Ma waho aʻe o kēia mau hōʻailona, aia paha kekahi mau hōʻailona ʻē aʻe i emi iki ka maʻamau. Inā ʻike ʻoe i kekahi mea ʻē a ʻokoʻa paha i ke kino o kāu keiki, e kamaʻilio koke me kāu kauka .
No ke aha lā e kū mai ai kēia kūlana?
E like me kā mākou i kūkākūkā ai ma mua, he kūlana kēia i hoʻokumu ʻia e kahi kīnā genetic. ʻO ke kikoʻī, ʻo nā loli i loko o nā genes FRAS1, FREM2, a me GRIP1 nā kumu nui.
Kāhea mākou i kēia ʻano o ka hoʻoili ʻana ma o nā genes ʻo 'Autosomal Recessive' . I kēia manawa, e nānā kākou pehea e hoʻomaopopo maʻalahi ai i kēia.
E noʻonoʻo ʻoe he kope hoʻokahi ko kou makuahine a me kou makuakāne o kēia ʻano kīnā i loko o ko lāua kino. Akā, ʻaʻohe o lāua maʻi, no ka mea, hoʻokahi wale nō kope o ka ʻano kīnā ko lāua. Kāhea mākou iā lāua he 'mea lawe'.
I kēia manawa, ke loaʻa i kēia mau mākua lawe keiki kahi keiki,
- Aia he 25% (hoʻokahi i loko o ʻehā) ka manawa e loaʻa ai i kahi keiki kēia maʻi (inā hoʻoilina nā mākua ʻelua i nā kope gene kīnā).
- Aia he 50% (hoʻokahi i loko o ʻelua) ka manawa e lilo ai ke keiki i mea lawe i nā hōʻailona ʻole, e like me nā mākua.
- Aia he 25% ka manawa kūpono ʻaʻole loa e hoʻoilina ke keiki i kēia gene kīnā a e olakino loa ʻo ia.
Ua like kēia me ka hoʻolei ʻana i kahi ʻāpana kālā. Ua like kēia pilikia i kēlā me kēia hāpai ʻana.
Pehea e ʻike ai i kēia maʻi?
ʻIke pinepine ʻia kēia maʻi ma mua o ka hānau ʻana o ka pēpē, ʻo ia hoʻi, i ka wā hāpai. Manaʻo nā kauka i kēia inā ʻike ʻia kekahi mau ʻano ʻē i loko o nā puʻupaʻa, nā māmā, a i ʻole nā manamana lima o ka pēpē i ka wā o kahi scan ultrasound i hana ʻia ma waena o 18 a me 20 mau pule. Hoʻolohe nui nā kauka i kēia, ʻoiai inā ua loaʻa i kekahi o ka ʻohana kēia maʻi ma mua.
I kekahi manawa, inā ʻaʻole hiki ke ʻike ʻia ke kiʻi, ua ʻike ʻia ke kūlana ma muli o nā ʻano kino i loaʻa i ka wā hānau. Hiki ke hana ʻia nā hoʻāʻo genetic e hōʻoia i ka hōʻailona.
Pehea lā ke ʻano o ka lāʻau lapaʻau a me ka wā e hiki mai ana o ke keiki?
ʻAʻohe lāʻau lapaʻau no ka maʻi Fraser i kēia manawa. Akā, ʻaʻole ia manaʻo ʻaʻohe mea hiki iā ʻoe ke hana. ʻO ka pahuhopu nui o ka lāʻau lapaʻau, ʻo ia ka mālama ʻana i nā hōʻailona o ke keiki a hāʻawi iā lākou i ke ola maikaʻi loa.
- ʻOki kino: Hiki ke hoʻoponopono ʻia kekahi mau ʻano kino ʻole (e like me ke kuʻi ʻana o nā manamana lima, ka ʻūmiʻi ʻana o nā maka) i kekahi ʻano ma o ke ʻoki kino.
- Mālama Kākoʻo: ʻO kēia ka mea nui loa. Pono ke keiki i nā lawelawe a kahi hui lapaʻau i haku ʻia me nā loea like ʻole. No ka laʻana, hana pū kekahi pediatrician, he nephrologist, a me ke kauka maka e hoʻomohala i kahi hoʻolālā lapaʻau no ke keiki.
ʻO ke ola o ke keiki e pili ana i ke koʻikoʻi o nā hōʻailona. I nā hihia o nā pilikia hanu koʻikoʻi a i ʻole nā pilikia puʻupaʻa , aia kekahi mau keiki i kahi pilikia weliweli o ka make ʻana i ka makahiki mua o ke ola. Eia nō naʻe, hiki i ka hapa nui o nā keiki me ka ʻole o nā pilikia koʻikoʻi ke ola i kahi ola maʻamau .
He mea nui loa ke aʻoaʻo ʻana no nā ʻano hoʻoilina i nā kūlana e like me kēia. Hiki iā ia ke kōkua iā ʻoe e hoʻomaopopo i ke kūlana, nā pilikia i nā lālā ʻē aʻe o ka ʻohana, a me nā hāpai ʻana i ka wā e hiki mai ana. E nīnau i kāu kauka e pili ana i kēia.
Leka Lawe-Home
- He maʻi laha ʻole ka Fraser Syndrome i hoʻokumu ʻia e kahi kīnā hoʻoilina.
- ʻO nā hōʻailona nui, he mau ʻano ʻē ia i nā maka, nā manamana lima, nā puʻupaʻa, a me ka ʻōnaehana hānau.
- Hiki ke ʻike pinepine ʻia kēia i ka wā o ka ultrasound i ka wā hāpai a i ka wā hānau keiki paha.
- ʻOiai ʻaʻole hiki ke ho'ōla piha ʻia, hiki i ke ʻoki kino a me ka mālama kākoʻo ke hoʻokele i nā hōʻailona o ke keiki a hoʻomaikaʻi i ko lākou ola.
- He paʻakikī ka mālama ʻana i kahi keiki e like me kēia. Pono ia i ke kākoʻo o kahi hui o nā loea, ke aloha o ka ʻohana, a me ke kākoʻo o nā mākua ʻē aʻe . E hoʻomanaʻo ʻaʻole ʻoe hoʻokahi.
- Inā kānalua ʻoe ua loaʻa i kāu keiki kēia maʻi, mai hopohopo a e nīnau koke aku i kāu kauka no ka ʻōlelo aʻo.
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