Nā Haumāna ... No ka manawa mua e lohe ai i kēia hua'ōlelo, manaʻo nui ka poʻe i nā moth nani, me ka mokuleleʻole i waena o nā pua a me ka hauʻoli o ka'ōpiopio, me ka nele i nā mea hōʻino a me nā hopohopo. I kēia manawa,ʻaʻole like ke ola o nā keiki me ka maʻi butterfly e like me ka moʻolelo pilikino a iʻole ke kiʻi kūpono. Ma kēiaʻatikala, e kamaʻilio mākou e pili ana i ka epidermolysis'ōpiopio - kahi maʻiʻeleʻele e pili ana i kaʻili o ke kino kanaka.
ʻO kaʻehā Epidermolysis: Nā kumu
Ma keʻano maʻamau,ʻike nā mākua o nā keiki hānai e pili ana i ka maʻi o ka'ōpiopio o kā lākou keiki i nā lā mua (a me nā hora) ma hope o ka hānauʻana o ke pēpē. ʻO ka manawa mua i hōʻikeʻia ai kēia maʻi i ka hopena o ke kenekulia 19, i ka makahiki 1886.
ʻO ke kumu o ka maʻi, he kīnāʻeha ia e pale ana i ka papa honua o ka mana e hana i kahi hana palekana. Laweʻia kēia maʻi i nā mākua i kona mau mea hūnāʻia, aiʻole e ala mai me ka manawaʻole. ʻO ka hopena,ʻo nāʻili (e like me nāʻano mucous membranes) he mea paʻakikī - hiki i ka liʻiliʻi iki ke hoʻopōʻino. Ināʻaʻole, he kūponoʻole kēlā mau keiki -ʻaʻole lākou e laʻa ma hope o ka uluʻana o ka naʻau a me ka noʻonoʻo, e ulu mau ana a me ke kōkua e hiki ai iā lākou ke lilo i wahi holoʻokoʻa o ka hui.
ʻAʻole i hōʻikeʻia nāʻano o ka hoʻoilina o ka maʻi -ʻo nā mea maʻi me ka epidermolysisʻoi aku e loaʻa i nā keiki olakino a maʻi. ʻo keʻano o kēia maʻi ma mua o ka hānauʻana o ke keiki hikiʻole ke hōʻoloʻia e kekahi o nā lāʻau lapaʻau eʻikeʻia -ʻaʻole hoʻi i ka hua'ōlelo o ke kukui a me nā ho'āʻo hoʻokolohua.
ʻO ka wā kūpono o ke ola no nā keiki hānai a hiki iʻekolu makahiki. I ka wā e hiki mai ana, me ka mālama ponoʻana a me ka mālamaʻana, e liʻiliʻi ka ili, e lilo i mea paʻa,ʻaʻole naʻe e hiki i ka ikaika o kaʻili o ka kanaka maʻamau. Eia kekahi,ʻaʻole hiki i nā keiki liʻiliʻi keʻike i nā pili o ka hopena,ʻaʻole hiki iā lākou ke wehewehe he hikiʻole, e like me keʻano o ka hukiʻana i nā kuli, mai kaʻili o nā wāwae ma hope o ka "peel away", a me nā maka a me nā papalina paha.
ʻO ka epidermolysis: ka lāʻau
He mea paʻakikī ka hopena o nā keiki hānai, no ka mea,ʻaʻohe mea hiki ke ola i kēia mau maʻi. ʻO nā mea a pau e hiki ke hana no nā pēpē pēpē e ho'āʻo e pale i ko lākou kinoʻeleʻele mai nā pōʻino (he mea paʻakikī loa), a inā he kūpono ia e pono ai e mālama iā lākou. Akāʻoiai, ma nā'āina he nui i hoʻomaluʻia e mālama i nā maʻi a me nā papa hana o ke ola olakino i hoʻolahalahaʻia, e hiki ai iā lākou ke mālama i ke ola maʻamau, e loaʻa ka hoʻonaʻauaoʻana, e alakaʻi i kahi ola kaiaulu ola a me ke pāʻani i nā haʻuki.
I ka CIS, me ka hōʻoia o ka epidermolysisʻano nui,ʻoi aku ka maikaʻiʻole o ka hōʻailona, no ka mea, he mea maʻamau ka maʻi,ʻaʻohe kūpono i nā kauka lapaʻau i ka hanaʻana i kēlā mau maʻi, a ma kekahi mau meaʻaʻole lākou e manaʻo i keʻano o kēia maʻi. Mahalo pinepine nā mākua i ke kūlana, e hanaʻana i ka lāʻau pono'ī a me ka ho'āʻo e mālama i ka hōʻino i kaʻili o keʻano phytotherapeutic pēpē, nā mea i hanaʻia e ka mea pono a me nā mea kamaʻilio, ka poli a me nāʻano'ē aʻe o kēiaʻano. ʻAʻole pono ka'ōleloʻana, ma hope o kēiaʻano "hana", nā kumukūʻai no ka hoʻihoʻiʻana i kaʻaoʻao o kahi keiki e hoʻonui i ka nui o ke kino, akā eʻoi aku ka paʻakikī o ka mālamaʻana i ka manawa kūpono, akā, emiʻole ka uku. Pono nā keiki e pono ai
Ma muli o kaʻikeʻana o ka lāʻau lapaʻau a me ka pilikanaka, nele kaʻike ma ka mālamaʻana a me ka mālamaʻana, he nui nā keiki me ka epidermolysis māmā i make i ka wā'ōpiopio.
Eia kekahi,ʻo ka mālamaʻana i kaʻili a me ka nohona o nā keiki hānai e like me ka nui o ka maʻi -ʻo kaʻoi o keʻano aʻoi aku ka'ōlelo i nā hōʻailona,ʻo kaʻoi aʻe o ka mālama a kūpono i ka mālamaʻana a me ka mālamaʻana i ke keiki.