Syndrome Usher: whakaahuatanga mate

I roto i te mate ira te wahi motuhake he syndrome Usher, ko muri i te pūtaiao Tatimana. whakaahuatia e ia te mate i roto i te tīmatanga o te rau tau 20.

tohu

syndrome Usher - he mate tuku, āhuatanga nei i te te ngaro oti o rongo mate, me te mate te kanohi o te kite. Tikanga, he tangata ki tenei syndrome e whanau turi. Te kore o te rongo he tika ki te retinitis pigmentosa. Kei te āta ngaro e tika ana ki te hoholo tomuri nei tere o te etine, e whakaoho Usher syndrome te kite. Tohu o te mate faaite mai ratou te tikanga i roto i te taiohitanga, engari i reira he wā ina e kitea e ratou i roto i ngā tamariki taitamariki, i te tau o rima.

hinga Tiro

I te wā wawe o te syndrome faaite ake rite te "matapo po", ka ngaro te tangata i te kaha ki te kite i tata i roto i nga wahi i reira he iti rama. Rerekē iwi hauora, e kore e urutau reira ki te pouri, a e kore e taea e tino whakatere i te reira. I tua atu, ngaro piringa (taha) kite, riro te reira kauhanga. Ka taea e kite Central e he rota o tau nui noa pai, engari i roto i tona ruruhitanga ko tata matapo te manawanui, i hanga reira tino riri, me te io.

I tua atu, iwi e mate ana i te rohirohi, me te maha mana'o rohirohi. Ko te tere o te hinga tei runga i te āhuatanga takitahi o te mate - kei te haere katoa ratou ake ara, engari i nga wa katoa atu iti iho āta ranei. Iwi ki Usher syndrome i te nuinga o te wā hono fakahohaasi te ruruku o ngā nekehanga. Tuatahi puta te reira i roto i te pouri, a i roto i te heke mai - a roto i te aroaro o te marama.

syndrome Usher: te maimoatanga o te mate

Kia aroha mai, he rawakore i roto i te mua o tenei mate rongoā, i reira he kore rawa whai hua o te maimoatanga. Ko he tino nui i roto i ngā o te tautoko hinengaro ki te manawanui tātaritanga wawe. Rongo waimaero ranei tino kowaiwai o rongo iwi, a na reira i uaua i roto i te kōrero. Na ka anga ia ki te ngaro atu, me te kite, he maha panics, kati kore ki te kōrero ki te ao waho. faingataa te āhuatanga e te meka e puta nga tohu tuatahi i roto i te taiohitanga, ka kore he pūmau te hinengaro.

Ki te kore e wa te āwhina i te tangata ki Usher syndrome, he tiketike te tūponotanga e runga i te tau te riro ia i te mate hinengaro - pēnei i tuakoi. Ki runga ki te rapunga o nga tohu tuatahi Me ki kite i te tākuta, me te whai i te maha o ngā whakamātautau ira. Ki te whakapumautia te tātaritanga te, ata whakarite i te manawanui ki te mooni hou i roto i nei kia ora ai ia i te ora tonu: ki te tiki i te mātauranga, te mahi, ara he whānau, me ētahi atu Otiia i roto i tenei take, kahore te awhina o ngaio .. (kaimātai hinengaro, kaiako , etc ...) e kore e taea te mahi.

syndrome Usher: te take o te mate

He aha i reira ko tenei mate? Ka rite ki tuhia i runga ake, syndrome Usher - he mate tuku, e taea e kore te huaketo reira, e kore e taea ki te whiwhi. Kei te kitea te reira i roto i nga tangata, me nga wahine ōrite. mamae ratou e pā ana ki e rima ranei e ono ōrau o te taupori o to tatou paraneta.

riro syndrome faaôraa mai i roto i te momo ngoikore. Ki te hunga e mate ngā mātua e rua ranei he kawe o te ira, te tūponotanga e e ka whanau he tamaiti ki te syndrome ratou - e pā ana ki 25%. Ki te te pāpāho (manawanui ranei) he kotahi anake, ko hokiate te mōrea. Ko te tūponotanga - e pā ana ki 0.5%. Ko tino ka waiho te tamaiti he kaikawe o te mate.

Tirohia koe i roto i te aroaro o Usher ira Syndrome taea - pūtaiao hou e kore kua tonu i kitea ara. Ki te whakawhirinaki he reira taea ki te mohio e pā ana ki reira anake, ki te i te iwi te iwi nei i te mate. e kore ai ira kawe i ki manukanuka koe - tohumate kore mau fakafo'ituitui ia. Ko te uri - kia, ki te mea e hoki kia te tahi atu matua te "rangatira" o te ira.

Me pēhea te ki te kōrero ki te iwi ki Usher syndrome

Communicating ki turi tangata e ngā waimaero he uaua. Tuatahi, i whakaritea kore rawa o kōrero, a tuarua, tūroro syndrome Usher maha pukuriri, riri, me te inoino o te ao katoa. Na reira, e hiahia ana koe ki te whai manawanui fakaofo ki whakapā pai.

Whanaunga, hoa me ētahi atu e kōrero maha ki te iwi ki tenei mate ira, tohunga whakahere nga tohutohu e whai ake:

• Ki te korero tatou e pā ana ki te tamaiti nei i fehangahangai ki te tohu tuatahi, kia ata engari papu faatupu ia e i roto i te ora i reira ka kia etahi fakangatangata, e, Heoi, e taea te hinga.
• Iwi ki Usher syndrome maha waiho i mooni, e kore e hiahia ki te hoatu ki runga ki te tatūtangā me ite i te tātaritanga. e tamata ratou ki te whakaahua e kahore tupu. Na te hauora tangata, he mea e minaminatia roto ki tenei take tākaro haere, tiaki o te whare kōrero tino whakamarie.
• Te kōrero ki te tangata e mate ana i te syndrome, e hiahia ana koe ki te tu i runga i te tawhiti iti i reira (50-100 cm), kia e taea te pānui i te reira mōhiohio i te ngutu, ka kia mohio ki te kanohi i te puna marama. I roto i te whānui, he reira e minaminatia ki te whiriwhiri ki te kōrero wahi pai-tahuna.
• I roto i te kaha ki te kukume i te aro o te tangata i taua, kia whakatata koe i te reira rawa tata.
• Ko te mara o te tirohanga he iti o te iwi ki Usher syndrome. Hūkari Me ki pūkete mō tenei take - ringa kia pā ana ki te taumata uma.
• I te po, e kore e taea te mahi i te iwi ki te syndrome, kahore te tauturu. Me haere tahi ratou na roto i te whakatupato o te fakafaingata'a'ia'anga iti.
• Kaua e whakama ki te whakahere i te tauturu, no te mea he tino whakaraerae tūroro syndrome Usher, me te maha zakompleksovanny. A ani i te tangata e pā ana ki te whai wāhitanga - he hoki ratou he raruraru nui.

mutunga

Ki te whakamamaetia ia tetahi tetahi aroha i tenei tohu, tamata ki te tango i tenei ki pūkete tonu ka pā ana ki a ia. Me taua iwi ki te tiaki ata mo'ikai fu'u. Ki te hiahia koe te tahi mea ki te āwhina i taua tangata, tamata ki te mahi i reira mohio, fakapapau'i te manawanui e he pai ia ka pakari ia ki te katoa. Kaua rawa e hanga ngahau o ona kohakore, me ara atu na e kore e faahapa ia ia mo ratou, ara, ki te he riri koe - mau hoki. Me haere mai te tangata ki ngā ki te āhuatanga, me te whakakaha i te whakaaro e Usher syndrome - e kore te reira na wehiwehi.