Proteus Syndrome: he aha ia, pehea e ʻike ai a mālama iā ia

Anter

• Nā hiʻohiʻona nui
• He aha ke kumu o ka maʻi maʻi
• Pehea e hana ai i ka lāʻau
• Ke kuleana o ka psychologist i ka Proteus Syndrome

ʻO ka Proteus Syndrome kahi maʻi maʻi laha ʻole i hōʻike ʻia e ka ulu nui a asymmetric o nā iwi, ka ʻili a me nā mea ʻē aʻe, e hopena ana i ka gigantism o kekahi mau lālā a me nā ʻokena, ʻo ka hapanui nā lima, nā wāwae, nā iwi a me nā iwi kuamoo.

Hōʻike pinepine ʻia nā ʻōuli o Proteus Syndrome ma waena o 6 a me 18 mau mahina o ka makahiki a ʻo ka ulu nui a disproportionate hoʻi e kū i ka wā ʻōpio. He mea nui e ʻike koke ʻia ka maʻi maʻi i hiki ai ke hana koke i nā ana e hoʻoponopono i nā deformation a hoʻomaikaʻi i ke kino o nā mea maʻi o ka maʻi maʻi, e pale ana i nā pilikia psychological, e like me ka hoʻokaʻawale kaiapili a me ke kaumaha, no ka laʻana.

Nā hiʻohiʻona nui

Hoʻokumu pinepine ka maʻi Proteus i ke ʻano o kekahi mau ʻano, e like me:

• Nā deformations i nā lima, nā wāwae, ka iwi poʻo a me ka iwi kuamoʻo;
• Asymmetry o ke kino;
• Pelu ʻili nui loa;
• Nā pilikia Spine;
• Lōʻihi helehelena;
• Nā pilikia puʻuwai;
• ʻO nā warts a me nā kiko kukui ma ke kino;
• Hoʻonui ākea;
• Hoʻonui i ke anawaena o nā manamana lima, i kapa ʻia he hypertrophy uila;
• Hoʻoiho noʻonoʻo.

ʻOiai he nui nā loli o ke kino, i ka hapanui o nā hihia, hoʻomohala mau nā mea maʻi me ka maʻi maʻi i kā lākou ʻike i ka maʻamau, a loaʻa paha kahi ola maʻamau.

He mea nui e ʻike ʻia ka maʻi ma ke ʻano he hiki, no ka mea inā mālama ʻia ka nānā ʻana mai ke ʻano o nā loli mua, hiki ke kōkua ʻia ʻaʻole wale e hōʻalo i nā maʻi psychological, akā e hōʻalo hoʻi i kekahi mau pilikia maʻamau o kēia maʻi. e like me ke ʻano o nā tumors laha ʻole a i ʻole ka hanana o ka thrombosis venous hohonu.

He aha ke kumu o ka maʻi maʻi

ʻAʻole i hoʻokumu maikaʻi ʻia ke kumu o ka Proteus Syndrome, akā manaʻo ʻia he maʻi maʻi paha ia e pili ana i ka hoʻololi kūlohelohe i ka ATK1 gen e hana ʻia i ka ulu ʻana o ka fetus.

ʻOiai he genetical, ʻaʻole manaʻo ʻia ʻo Proteus Syndrome hoʻoilina, ʻo ia hoʻi ʻaʻohe makaʻu o ka lawe ʻana i ka hoʻololi mai nā mākua i nā keiki. Eia nō naʻe, inā aia kekahi mau hihia o ka Proteus Syndrome i loko o ka ʻohana, koi ʻia e hana i nā ʻōlelo aʻoaʻo kūʻē, no ka mea aia paha kahi predisposition ʻoi aku ka nui no ka hanana o kēia hoʻololi.

Pehea e hana ai i ka lāʻau

ʻAʻohe mālama pilikino no ka Proteus Syndrome, a ua ʻōlelo pinepine ʻia e ke kauka e hoʻohana i nā lāʻau lapaʻau kikoʻī e kāohi i kekahi mau ʻōuli, i ka hoʻohui ʻana i ke ʻoki e hoʻoponopono hou ai i nā kino, hemo i nā ʻōpala a hoʻomaikaʻi i ke kino.

Ke ʻike ʻia i nā wā mua, hiki ke kāohi ʻia ka maʻi maʻi ma o ka hoʻohana ʻana i kahi lāʻau i kapa ʻia ʻo Rapamycin, kahi lāʻau hoʻomalu ākea i hōʻike ʻia me ke kumu o ka pale ʻana i ka ulu ʻana o nā mea pono ʻole a pale i ka hoʻokumu ʻia o nā tumors.

Eia hou, he mea nui ka lawelawe ʻia ʻana e kahi hui multidisciplinary o nā ʻoihana olakino, kahi e hoʻopili ai i nā pediatricians, orthopedists, plastic surgeons, dermatologists, dentist, neurosurgeons and psychologists, ʻo kahi laʻana. ʻO kēlā ala, e loaʻa i ke kanaka nā kākoʻo āpau e pono ai ke ʻano o ke ola maikaʻi.

Ke kuleana o ka psychologist i ka Proteus Syndrome

ʻAʻole mea nui ka nānā ʻana i ka noʻonoʻo no ka mea maʻi me ka maʻi maʻi pū kekahi akā no nā lālā o ko lākou ʻohana, ʻoiai kēia ala e hiki ai ke hoʻomaopopo i ka maʻi a lawe i nā hana e hoʻomaikaʻi ai i ke ola o ke kanaka a me ka hilinaʻi iā ia iho. Eia hou, pono ka psychologist e hoʻomaikaʻi i nā pilikia aʻo, mālama i nā hihia o ke kaumaha, hoʻemi i ka hōʻoluʻolu o ke kanaka a ʻae i ka launa pū ʻana.