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Zambiri zadzidzidzi kwa odwala EB
Tsambali limagawana zambiri zomwe mungafune ngati muli mu epidermolysis bullosa (EB), kapena zadzidzidzi zomwe sizikugwirizana ndi EB, kuphatikiza zambiri za EB zomwe akatswiri omwe si a EB azachipatala ayenera kudziwa akamakuchiritsani.
EB kulumikizana mwachangu komanso mwadzidzidzi ndi chithandizo
Muzachipatala (ngati mukudwala kwambiri, mwavulala, kapena pali chiopsezo ku moyo wanu) nthawi zonse imbani 999 kapena pitani ku dipatimenti ya Accident & Emergency (A&E) yomwe ili pafupi nanu. Kuti mupeze zambiri za dipatimenti yanu yapafupi ya A&E chonde pitani patsamba la NHS.
Chisamaliro chachangu
Kuti mupeze chithandizo chamankhwala mwachangu - EB kapena chosagwirizana ndi EB - imbani 111 kapena funsani GP wakudera lanu. Ngati mulibe mauthenga awo, chonde pitani ku webusaiti NHS.
Makhadi a Chidziwitso cha Zamankhwala
Chifukwa EB ndi matenda osowa kwambiri, palibe chitsimikizo kuti sing'anga kapena GP yemwe akukuchizani adzakhala atamvapo kapena kumvetsa. Angafunike zambiri za EB ndi upangiri, ndipo angafunike kulumikizana ndi dotolo wapakhungu kapena membala wa gulu lazaumoyo la EB.
Pofuna kuonetsetsa kuti ali ndi chidziwitso choyenera ndi mauthenga oyenera timalangiza kuti nthawi zonse muzitchula kuti muli ndi EB mukamalankhula ndi katswiri wa zaumoyo, ngakhale chifukwa chomwe mukuwawona sichikugwirizana ndi EB yanu. Izi zithandizira kuwonetsetsa kuti iwo ndi magulu awo apereka ndalama zofunikira, mwachitsanzo, kupewa zomata, kupewa kutsetsereka pokusamutsani, kusamala pochotsa zovala zilizonse ndi zina.
Timalimbikitsanso kuti nthawi zonse muziwonetsa khadi lanu la 'Ndili ndi EB'.
Ngati mulibe kapena mukufuna mtundu wa tag ya katundu, mutha kupempha khadi podutsa kulumikizana ndi Gulu la Umembala la DEBRA UK.
Kapenanso, mutha kutsitsa khadi yofunikira yomwe ili pansipa ndikusindikiza kapena kuisunga ngati chithunzi pafoni yanu. Chonde sankhani yomwe ikugwirizana ndi malo azachipatala a EB omwe muli nawo. Ngati mukuyang'aniridwa ndi gulu lachipatala la EB kapena chithandizo china chazachipatala chapafupi, mukhoza kulemba tsatanetsatane wokhudzana ndi mtundu womwe mulibe.
Sindikizani kapena sungani khadi lanu pafoni yanu pakagwa mwadzidzidzi
Chipatala cha Amayi ndi Ana cha Birmingham
Chithunzi cha 295.96 KBChipatala chachikulu cha Ormond Street
Chithunzi cha 295.41 KBChipatala cha Solihull
Chithunzi cha 295.21 KBGuy's ndi St Thomas' Hospital
Chithunzi cha 295.88 KBGlasgow Royal Chipatala
Chithunzi cha 295.59 KBChopanda kanthu - lembani zomwe mukufuna
Chithunzi cha 322.87 KBZikomo ponditumizira khadi yanga ya 'I have EB'. Nditawonetsa pachipatala chaposachedwa, adatenga EB yanga mozama. M’moyo wanga aka kanali koyamba kuti izi zichitike.”
kuwalandira pomwepo
Chonde kumbukirani kuti DEBRA EB Community Support Team likupezeka kaamba ka thandizo losakhala lachipatala komanso kukuthandizani kukupatsirani zithandizo zoyenera zachipatala Lolemba-Lachisanu 9am-5pm.
EB ntchito zapadera zachipatala
Kuti mumve zambiri komanso tsatanetsatane wa malo anayi azaumoyo a NHS EB komanso ntchito ya Scottish EB, chonde pitani patsamba lathu pa EB katswiri wazachipatala.
Ngati mungafune kudziwa zambiri, kapena thandizo potumiza ku chipatala cha EB, chonde lemberani EB Community Support Team.
EB kasamalidwe ka odwala kwa akatswiri azaumoyo
Kuti mupeze zambiri zofunikira komanso malangizo othandizira odwala omwe ali ndi EB, chonde pitani kwathu EB tsamba loyang'anira odwala.