Pfeiffer Syndrome: he aha ia, ʻano, ʻike a me nā lāʻau

Anter

• Nā ʻano o ka Pfeiffer Syndrome
• Pehea e hana ai i ke kuhi
• Pehea ka lāʻau

ʻO ka Pfeiffer Syndrome kahi maʻi maʻamau i hiki ke hui ʻia nā iwi i hana ke poʻo ma mua o ka mea i manaʻo ʻia, i nā pule mua o ka hāpai ʻana, e alakaʻi ai i ka ulu ʻana o nā deformities i ke poʻo a me ka maka. Eia kekahi, ʻo kahi hiʻohiʻona o kēia maʻi ka hui ʻana ma waena o nā manamana liʻiliʻi a me nā manamana wāwae o ka pēpē.

ʻO ke kumu he genetical a ʻaʻohe mea a ka makuahine a makua kāne paha i hana ai i ka wā hāpai e hiki ai ke kumu i kēia maʻi akā aia kekahi mau noiʻi e hōʻike ana i ka hāpai ʻana o nā mākua ma hope o ka makahiki 40, ʻoi aku ka nui o ka manawa o kēia maʻi.

Nā ʻano o ka Pfeiffer Syndrome

Hiki ke hoʻokaʻawale ʻia kēia maʻi e like me ka nui, a hiki ke:

• ʻAno 1: ʻO ia ka ʻano maʻalahi o ka maʻi a loaʻa ke hui ʻana o nā iwi iwi poʻo, ua palu nā pāpālina a aia nā hoʻololi o nā manamana lima a me nā manamana wāwae akā maʻamau ka ulu maʻamau o ka pēpē a mālama ʻia kona ʻike, ʻoiai he kuli paha a ʻōlapa.
• ʻAno 2: ʻO ke poʻo i ke ʻano o kahi clover, me nā pilikia i ke kikowaena pūnaewele, a me ka deformity i nā maka, nā manamana lima a me ka hoʻokumu ʻana o nā meaola. I kēia hihia, he fusion ka pēpē ma waena o nā iwi o nā lima a me nā wāwae a no laila ʻaʻole hiki ke loaʻa nā kuʻekuʻe a me nā kuli i wehewehe pono ʻia a pili pinepine ʻia ka retardation noʻonoʻo.
• ʻAno 3: Loaʻa iā ia nā ʻano like me ke ʻano 2, eia naʻe, ʻaʻole ke poʻo i ke ʻano o ka clover.

ʻO nā pēpē wale nō i hānau ʻia me ka ʻano 1 ka mea e ola ana, ʻoiai ke nui o nā ʻoki ʻana i ko lākou ola, ʻoiai ʻoi aku ka nui o ke ʻano 2 a me 3 a ʻaʻole ola ma hope o ka hānau ʻana.

Pehea e hana ai i ke kuhi

Hana pinepine ʻia ke kuhi ma hope koke o ka hānau ʻana ma ka nānā ʻana i nā ʻano āpau i loaʻa i ka pēpē. Eia nō naʻe, i ka manawa o ultrasounds, hōʻike paha ka mea hānau i ka maʻi o ka pēpē i hiki i nā mākua ke hoʻomākaukau. Kākaʻikahi ka ʻōpū e hōʻike ana ʻo Pfeiffer's Syndrome ia no ka mea aia kekahi mau syndrome ʻē aʻe e like me nā ʻano like me Apert's Syndrome a i ʻole Crouzon Syndrome, no ka laʻana.

ʻO nā hiʻohiʻona nui o ka Pfeiffer's syndrome ka fusion ma waena o nā iwi e hana ana i ka iwi poʻo a me nā loli o nā manamana lima a me nā manamana wāwae i hiki ke hōʻike ʻia ma o:

• ʻO ke poʻo poʻo oval a asymmetric paha, i ke ʻano o ka clover lau 3;
• Ihu pālahalaha liʻiliʻi;
• Alanui alaloa;
• Hiki i nā maka ke koʻikoʻi a ākea ke kaʻawale;
• Mānoanoa loa nā manamana nui a huli i loko;
• Ua haʻalele loa nā manamana wāwae nui mai kahi koena;
• Hui pū nā manamana wāwae ma o ka membrane lahilahi;
• Loaʻa paha ka makapō ma muli o nā maka i hoʻonui ʻia, ko lākou kūlana a me ka hoʻonui ʻana o ka maka maka;
• Hiki paha ke kuli ma muli o ka hana hewa ʻole o ke aʻa pepeiao;
• Loaʻa paha ka luhi o ka noʻonoʻo;
• Aia paha he hydrocephalus.

Hiki i nā mākua i loaʻa pēpē e like me kēia ke loaʻa i nā keiki ʻē aʻe me ka maʻi hoʻokahi a no ia kumu e ʻōlelo ʻia e hele i kahi kūkā kūkākūkā genetic e loaʻa ai ka ʻike maikaʻi a ʻike i nā manawa kūpono e loaʻa ai kahi pēpē olakino.

Pehea ka lāʻau

Pono e hoʻomaka ka hoʻomaʻamaʻa ʻana no ka maʻi o Pfeiffer ma hope o ka hānau ʻana me kekahi mau hana i hiki ke kōkua i ka pēpē e hoʻomōhala ʻoi aku ka maikaʻi a pale i ka nalo ʻana o ka hihiʻo a i ʻole ka hoʻolohe ʻana, ke loaʻa ka manawa e hana ai. ʻO ka pēpē i loaʻa i kēia maʻi maʻi ke hele i nā ʻoki ʻana ma ka iwi poʻo, ka maka a me ka iwi ā i mea e hoʻohaʻahaʻa ai i ka lolo, hana hou i ka iwi poʻo, ʻoi aku ka maikaʻi o ka maka i nā maka, hoʻokaʻawale i nā manamana lima a hoʻomaikaʻi i ka nau.

I ka makahiki mua o ke ola, pono e hana i ke kaha ʻana e wehe i nā iwi poʻo, no laila e ulu maʻamau ka lolo, me ka ʻole o ka iwi ʻia o ke poʻo. Inā he maka koʻikoʻi loa ko ka pēpē, hiki ke hana ʻia kekahi mau ʻoki ʻana e hoʻoponopono i ka nui o nā kaola i mea e mālama pono ai i ka ʻike.

Ma mua o ke kō ʻana o ke keiki i 2 mau makahiki, hiki paha i ke kauka ke ʻōlelo aku e loiloi ʻia ka niho no ke kaha ʻana a i ʻole ka hoʻohana ʻana i nā hāmeʻa hoʻoliʻiliʻi o nā niho, he mea nui ia no ka hānai ʻana.