Nga korero ohorere mo nga turoro EB
Ka tohatohahia e tenei wharangi nga korero whakapä nui ka hiahiatia e koe mena kei roto koe i te epidermolysis bullosa (EB), he ohorere hauora kore-EB ranei, me nga korero EB matua me mohio nga tohunga ngaio hauora ehara i te EB i te wa e rongoa ana koe.
EB nga hoapā me te tautoko ohorere me te ohorere
I roto i te ohorere hauora (mehemea he tino mate koe, he whara, he raru ranei ki to oranga) waea atu ki te 999, haere ranei ki to tari Accident & Emergency (A&E) tata. Ki te rapu korero mo to tari A&E tata haere koa ki te paetukutuku NHS.
Te hauora tere
Mo te tiaki hauora ohorere - EB, ehara ranei i te EB - waea atu ki te 111, whakapā atu ranei ki to taakuta o to rohe. Mena kaore koe i a raatau korero whakapiri, tirohia te Paetukutuku NHS.
Nga kaari korero rongoa
Na te mea he ahua onge a EB, karekau he taurangi ka rongo te rata, te GP ranei e rongoa ana i a koe, ka mohio ranei koe. Ka hiahia pea ratou ki etahi atu korero mo te EB me etahi atu tohutohu, a ka hiahia pea ratou ki te whakapā atu ki tetahi tohunga kaiao kiri waea, ki tetahi mema ranei o te roopu tiaki hauora EB.
Kia mohio kei a ratou nga korero tika me nga korero whakapiri ka tūtohu matou kia whakahua tonu koe kei a koe te EB i te wa e korero ana koe ki tetahi tohunga hauora, ahakoa ko te take e kite ana koe kaore e pa ana ki to EB. Ma tenei ka awhina i a raatau me o raatau roopu ki te whakarite i nga tahua e tika ana, hei tauira, te karo i nga raima piri, te karo i te paheke i te wa e whakawhiti ana koe, me te tupato ki te tango i nga kakahu aha atu.
Ka tūtohu ano matou kia whakaatu tonu koe i to kaari 'EB'.
Mena karekau he mea kei a koe, kei te pirangi koe ki tetahi putanga tohu tueke, ka taea e koe te tono kaari ma whakapā atu ki te Rōpū Mema DEBRA UK.
Ka taea ranei e koe te tango i te kaari e tika ana i raro nei ka taia, ka tiakina ranei hei whakaahua ki to waea. Tena koa tohua te mea e pa ana ki te whare hauora EB kei raro koe. Mena kei raro koe i te maataki a te roopu hauora EB rohe, etahi atu ratonga hauora rohe ranei, ka taea e koe te whakaki i nga korero e tika ana mo te putanga tuwhera.
Tāngia, tiakina rānei tō kāri ki tō waea mō ngā ohorere
“Mauruuru koe mo te tuku mai i taku kaari 'EB'. I taku whakaaturanga i tetahi huihuinga hauora tata nei, i tino aro ia ki taku EB. I roto i toku oranga katoa koinei te wa tuatahi kua pa mai tenei.
hohoro
Kia mahara ko te DEBRA EB Hapori Tautoko Team kei te waatea mo te tautoko kore-rongoa me te awhina i a koe ki te tuku tohu ki nga ratonga hauora e tika ana Mane-Paraire 9am–5pm.
Nga ratonga hauora tohunga EB
Mo etahi atu korero me nga korero whakapiri mo nga pokapū hauora e wha NHS EB o te hiranga me te ratonga Scottish EB, tirohia to maatau wharangi EB tohunga hauora.
Mena kei te pirangi koe ki etahi atu korero, ki te tautoko ranei me te tuku korero ki tetahi whare hauora tohunga EB, tena koa whakapā mai ki a maatau Rōpū Tautoko Hapori EB.
Te whakahaere a te manawanui EB mo nga tohunga hauora
Ki te rapu i nga korero me nga tohutohu mo te whakahaere i nga turoro e noho ana me te EB, tirohia to maatau Whārangi whakahaere tūroro EB.
I whakaputaina te whaarangi: Oketopa 2024
Te ra arotake ka whai ake: Maehe 2025