Hahai maʻi pale: epidermolysis bullosa

Epidermolysis bullosa (EB), a me ka mea i kapaia, hahai maʻi pale - keia mea he ili loa ke nānā kāna hana. Mau keiki i kapaʻia keiki me Letra Kolohe Kai. Inā keia inoa 'oe i kekahi mau hana hoihoi' ahahui nona, i ka maʻi iho nei,ʻaʻole aesthetically oluolu. I ka mea, nā mea maʻi me ka epidermolysis bullosa pana aku au i ko lākou ola holoʻokoʻa i loko o ke ola hoopai. Ke kumu - kā lākou ili, fragile me hahai mau'ēheu.

Eia naʻe, i ka maʻi o "hahai maʻi pale" hiki ole ke disinfected. No ka mea, ua nui i loko iho i loko o ka aaiaoeʻilikai. Oia na keiki Pono kūikawā: loa palupalu 'ia, ke kapa a me kamaa. Ma Rusia, i kēia maʻi hiki ka mea,ʻaʻole i komo i loko o ka papa inoa o ka loa pohihihi keia maʻi. Eia naʻe, aia no he hana dala, e kōkua keiki hahai "Bella."

Kela a me keia makahiki i ka hailona o ke dala ua hâʻawi wale 'ia ka puu dala, no ka somehow kōkua keiki, ka poe i ka maʻi "hahai maʻi pale". Photographs o nā mea maʻi hiki ke ike i loko o kēia 'atikala, a ma ka' epekema 'inikua moʻokalaleo. Eia naʻe, 'ike ma epidermolysis bullosa i ole loaa pono hoi o ka makana i loko o Rusia a me Moscow'āina.

Maʻi "hahai maʻi pale" ua i ike ai i ka mau lehulehu. Mau hiki i'ōlelo kona huikau inoa - epidermolysis bullosa. Eia naʻe, i kēia mau keiki i nā mea a pau ma luna o Rusia a me Moscow'āina. Kēlā me kēia no ka hoʻomanawanui iki mai i ka ia pilikia: i nā kauka mai i ike pehea e hana ai, i kaʻike, o "ka hola", aʻaʻole manawa ua malama pono wau i na ano o ka maʻi. A me kekahi manawa, i kona makuwahine i hūnā mau keiki, e hiki aku ai i kā lākou make ma muli o ke kūpono malama.

hahai maʻi pale ua wehewehe aku ma ke ano o ke kanaka ili wikiwiki Oe. Ke kaumaha ma muli o nā Oe e ka kēia mauʻano o Epidermolysis Bullosa (EB):

1. Simple. Ua ua hana ma luna o ka uka like o ka ili. Ka ili thickens ma luna o nā poho a me nā kapuwaʻi o nā wāwae. Oe hiki ke hana a hiki i loko o ka waha.
2. Palena. Eia kahi mea akaka ma ka dermal-epidermal huina. I loa mai Oe ke ikeia ma na paia o ka esophagus, liʻiliʻi a me genitourinary'āpana.
3. Dystrophic. Oe ikeia ma na kuli, lima, kuʻekuʻe lima, mucous membranes, mea e loli i ke esophagus, i pilikia o ka ulu ana a me kou kino. Kēiaʻano ua i wehewehe aku ma ke kuʻi nukeliu o nā manamana lima a me nā manamana wāwae.

Maʻi pale hahai - i ka hopena o kūpono ho okumu ana o ke kumuʻiʻo i loko o kaʻili, a me kona wa e kaawale aku. Kekahi kumu o ka maʻi i ia i kekahi noho'na makaainana i ulu 'ōewe mutation.

Ma ka hanau ana, i kaʻili o ka maʻi keiki a hoʻopöholo ihola me ka ili o ka nahesa. O ka holo ana, keia kumu he kŰia naoh i loko o ka makuwahine. He nui wale hoole i ka maʻi keiki mea no loko o ka maternity paa. Akā, i ka manawa o ke ola i ke kai o ke keiki a me ka maʻi epidermolysis bullosa i loko o na keiki o ka hale oʻaneʻane Aʻohe. Ka hapa nui o na keiki i make ma ka hewa malama. Ma hope o nā mea a pau, i kēia mau keiki pono e loa akahele lawelawe.

Ka loa paʻakikī manawa i loko o nā mea maʻi - keia mea o ka makahiki i i 3 makahiki. Ke kiʻekiʻe, a me ka malama pono, ili coarsens. A keiki uuku ka wā imi e kolo a pau o ka ua kēnā kuli a me ka lima. Skin blisters a me peels aku, ma o na la loa kaʻeha. Ua mau keiki ke ole e lulu lima me ka maʻamau kanaka. Me ka ulu ana mai, ka mea, i nā aʻo e mālama lākou iā lākou iho. I ka makahiki o ka 3 makahiki o ke ola i hiki.

Eia naʻe, hoʻomanawanui iki mai i ka nui kino o Epidermolysis Bullosa kela la i keiaʻike piʻi loa ka eha a me ka ohane, a e ole kōkua i antihistamines. Eia hou kekahi, o kela mea keia ekolu lā, ka mea e hoomanawanui, a hiki i ka mea e pono ai, a ola dressings. Mau keiki, e like a pau'ē aʻe terminally mai, e kuikawa. Ka mea, i hiki ole mau maka, i kēia unbearable eha paha mai, ua hiki ole maopopo.