Williams Syndrome

Maʻi maʻi ʻo Williams

Nui nā maʻi maʻi e noho nei i kēia lā a ʻaʻohe mea nui o lākou. ʻO ka mea a mākou e haʻi aku nei iā ʻoe ʻaʻole paha kekahi o nā mea maʻamau, akā he mea koʻikoʻi ia, e like me kā mākou i ʻōlelo ai. i kēia lā ʻoe E kamaʻilio mākou e pili ana iā Williams Syndrome, kekahi o nā maʻi hoʻomohala i loaʻa i kekahi o kēlā me kēia 7.500 keiki.. He kakaikahi a ʻike ʻole ʻia he hoʻoilina.

Ua ʻike ʻia kēia maʻi maʻi ka ʻO Elf Keiki Syndrome, ʻano e ka hoʻololi i ka hoʻomohala neurologicalʻuhane a loaʻa kekahi hiʻohiʻona ʻano maʻamau a i ʻole kekona, e like me ko ka elf. ʻOiai ma kahi o nā hiʻohiʻona o ka helehelena he nui nā mea ʻē aʻe e pono ai mākou e haʻi. Mai lilo i mea kiko'ī!

He aha ke ʻano o ke keiki me Williams Syndrome?

Keia mau keiki liʻiliʻi pinepine no ka wā hāpai a me ka lohi o ka ulu ʻana e pili ana i nā pilikia hānai, paʻakikī i ka omo ʻana a me ka ʻai ʻana. ʻO Strabismus, ka maʻi otitis maʻi, ka hernia inguinal a me kekahi mau pilikia cardiovascular e loaʻa i nā makahiki mua o ke ola. Pono e ʻōlelo ʻia i kekahi manawa, ʻo ka hope ka mea koʻikoʻi loa e hiki ai iā lākou ke pilikia, no ka mea e koi ana kekahi o lākou i nā hana ke piha lākou i 5 mau makahiki. No ka mea, ʻoi aku ka haiki o nā ʻaʻaʻa puʻupuʻu ma mua o ka mea maʻamau a no laila pono ke ʻoki ʻia, ʻoiai ʻo lākou ka mea e lawe i ke koko i ka māmā.

ʻO nā keiki me ka maʻi Williams Hoʻomaka pinepine lākou hele wāwae ma hope ma mua o ka maʻamau, ma muli o nā pilikia me ka hoʻonohonoho ʻana, ke kaulike, a i ʻole ka ikaika e pili ana i ka ʻōnaehana muscular a me ka iwi iwi, ka ʻōnaehana digestive, ka ʻōnaehana urinary, nā maka, a me nā mākau kaʻa maikaʻi. He maʻalahi lākou e ka lae haiki, hoʻonui ʻia ka ʻiʻo a puni nā maka, kahi ihu pōkole, haʻi ʻia nā papalina kulu, kahi ʻāʻī liʻiliʻi, nā lehelehe mānoanoa, a me ka malocclusion niho.

Nā mākau o nā keiki me Williams syndrome

I ka manawa hea e hoʻomaka ai ke keiki me Williams Syndrome e ʻōlelo?

Hoʻomaka lākou e ʻōlelo ma hope, ma kahi o ʻumikumamāwalu mahina a i ʻole hiki iā ia ke hiki i ʻekolu makahiki, e ʻōlelo ana i nā ʻōlelo piha. ʻOiai ʻo ka mea maʻamau ka haʻi ʻana i nā huaʻōlelo hoʻokahi. Ua ʻike mua mākou he honua kēlā me kēia keiki a ʻaʻole hiki ke hoʻohālikelike ʻia. I kekahi manawa ʻike mākou i kekahi e hahai ana i ke ʻano like akā ʻo ia kekahi mea i lawe ʻia i ka leka. No laila pono mākou e hāʻawi iā lākou i ka manawa no ka mea aia paha kekahi o lākou i kahi ala a i ʻole pilikia aʻo iki paha.

Pono e ʻōlelo ʻia, ʻoiai ʻaʻole lākou e haʻi i nā huaʻōlelo, e hōʻike nui lākou me ko lākou mau helehelena ma ke ʻano o nā ʻano. No ka mea, hoʻohana lākou iā lākou i hiki ke kamaʻilio, a me ka nānā maka. Pīhoihoi ʻoe i ka maikaʻi o lākou i ke aʻo ʻana i nā mele. As e hoʻomohala maikaʻi ʻia ka hoʻomanaʻo auditory.

He aha ke kumu o kēia maʻi maʻi

Ke koi hou nei makou he ma'i kakaikahi loa ia. Hiki ia ke loaʻa ʻole iā ʻoe kekahi o nā kope i kapa ʻia o nā genes ma waena o 25 a me 27, ma ka helu 7. Hiki wale ia ma muli o kekahi hoʻololi ʻana, ma ka hua manu a ma ka sperm paha, akā ʻaʻohe ona kumu kiko'ī. ʻOiaʻiʻo, i ka wā e hōʻike ai kekahi i kekahi hoʻololi ʻano genetic, hiki pinepine ia. Ka mea nui o ʻO kēlā gene i nalowale i ka hoʻomohala ʻana, ʻo ia ke kuleana no ka hoʻohui ʻana i ka elasticity i nā ʻiʻo a me na aa koko. ʻO ia ke kumu a mākou i ʻōlelo ai ma mua, ua ʻoi aku ka liʻiliʻi o nā aʻa a me nā pilikia.

I ka manawa hea e hoʻomaka ai ke keiki me ka maʻi Williams e ʻōlelo?

He aha kāu mau hiʻohiʻona

Pono e ʻōlelo ʻia he ʻano extroverted ko lākou, no ka mea, he ʻoluʻolu loa lākou a makemake e hui pū me nā kānaka. No ka mea maʻamau lākou e kamaʻilio maikaʻi loa a ʻaʻole wale me nā huaʻōlelo, e like me kā mākou i ʻike ai, akā me nā ʻano hana. He hoaaloha loa lākou, ʻoiai he mea hoʻokani liʻiliʻi i kekahi manawa no ka mea ʻaʻole lākou e kāohi i ko lākou mau manaʻo a hiki ke lawe iā lākou i ka palena, akā makemake mau lākou e hana i nā hoaaloha he nui, ʻoiai i kekahi manawa ʻaʻole ia he hana maʻalahi e like me kā lākou makemake. . ʻO ka lua, paʻakikī loa lākou i ka walaʻau a hiki i kēia ke hoʻoulu i ka hopohopo. Me kēia mau mea a pau, e loaʻa mau ana ka minoʻaka ākea ma ko lākou mau maka. He ʻoluʻolu nō hoʻi lākou, ʻoiai inā ʻaʻole leʻaleʻa ka poʻe a puni lākou. He ʻoiaʻiʻo hiki iā lākou ke hoʻohilahila a no kēia, pono lākou e hoʻoikaika nui a puni lākou, ʻoi aku ka hoʻomaha a i ʻole ka maʻalahi i kā lākou hana i kēlā me kēia lā.

ʻO kou akamai a ikaika paha

Loaʻa i kēia mau keiki nā mana e like me ke mele, ʻoi aku ka maʻamau o nā keiki me kēia maʻi. He mea maʻamau ka noʻonoʻo ʻana i ke mele i loko o lākou a hiki ke hoʻohana ʻia e hoʻokomo ʻia i loko o nā papahana ʻaʻole ikaika i loko o lākou e like me ka makemakika a me ka ʻōlelo. ʻO ka hoʻomanaʻo hoʻomanaʻo pōkole a lōʻihi kekahi mea ikaika, hiki iā lākou ke hoʻopaʻanaʻau i nā mele a me nā moʻolelo ma mua o ka mākaukau e heluhelu i kekahi kikokikona. ʻO ka hoʻomanaʻo lōʻihi kahi hiʻohiʻona i loko o lākou, i ka wā i hopu ai lākou i ka ʻike, hiki iā lākou ke mālama me ka pololei loa.

Eia kekahi ʻO kā lākou mau huaʻōlelo kekahi mea e hōʻike ʻia, no ka mea, ma ka mālama ʻana i nā huaʻōlelo hou aʻe, hiki iā lākou ke hoʻohana iā lākou ma nā ʻano ʻokoʻa, e alakaʻi iā lākou e hoʻopaʻa i nā huaʻōlelo hou aku i ka manawa liʻiliʻi. Makemake lākou e hana me nā kiʻi a i ʻole nā ​​kiʻi mai nā puke, nā kiʻi pena a me nā mea like. No laila, he manaʻo maikaʻi e hiki ke hoʻolauna iā ia i kāu mau papa maʻamau. ʻO kekahi o nā mea hiki, a mākou i hōʻike mua aʻe nei, ʻo ia ka mana e hoʻomaka i kahi kamaʻilio. Hiki iā lākou ke hāpai i ke kumuhana a loaʻa kahi hoʻokipa kaiaulu maikaʻi. ʻO ia ke kumu he mea nui e hiki ke hoʻokō ʻia i kāu papa. I kēia manawa ua ʻike nui ʻoe e pili ana i ka Williams Syndrome!


Hoʻopili ka ʻike o ka ʻatikala i kā mākou kumumanaʻo o ka hoʻoponopono hoʻoponopono. E hōʻike i kahi kaomi hemahema ʻaneʻi.

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Kāu leka uila aae? E,ʻaʻole e paʻiʻia.

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  1. He kuleana no ka ʻikepili: Miguel Ángel Gatón
  2. Ke kumu o ka ʻikepili: kaohi SPAM, hoʻokele ʻōlelo.
  3. Legitimation: Kou ʻae
  4. Ka kamaʻilio ʻana o ka ʻikepili: ʻaʻole e hōʻike ʻia ka ʻikepili i nā ʻaoʻao ʻekolu koe ka mana o ke kānāwai.
  5. Pūnaewele mālama: Pūnaewele i mālama ʻia e Occentus Networks (EU)
  6. Nā Kuleana: I kēlā me kēia manawa hiki iā ʻoe ke palena, hoʻōla a kāpae i kāu ʻike.

  1.   Rose Aznar ia

    Ma ke ʻano he makuahine o kahi keiki me ka maʻi maʻi williams, e hana wale i hoʻokahi paukū. E ʻoluʻolu mai hoʻohana i ka huaʻōlelo elf face. ʻOiai he manawa maʻamau paha ia, no lākou a me ko lākou mau ʻohana he mea ʻino ia. Inā mākou pahuhopu e hoʻohui iā lākou i kahi kaiāulu, mai hoʻohui i ka wahie i ke ahi. Mahalo nui loa

  2.   ʻO Carmen Rumayor ia

    Aloha, maikaʻi awakea, ʻo wau ka makuahine o kahi kaikamahine 20 makahiki me kēia maʻi. A hiki i 4 mau makahiki i hala aku nei ua ʻoi aku ka liʻiliʻi o ka lawe ʻia ʻana, e ʻimi ana i nā hopena i nā pilikia e pili ana i ke olakino a me ke aʻo, akā e like me kaʻu i ʻōlelo ai 4 mau makahiki i hala aku nei manaʻo wau me he mea lā e ʻelemakule ana wau, I kēlā me kēia lā kahi hakakā e puka i waho o kahi moe, luhi ʻoe a ʻeha hoʻi, kaumaha ia ʻaʻole e loaʻa kahi loea e haʻi iā ʻoe i ka mea e hana nei a me ka hopena inā he ʻoiaʻiʻo koʻu ʻano, inā hana wau ia ʻaʻole paha