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.
Palinso makadi athu odziwitsa zachipatala omwe mungagwiritse ntchito kuti mugawane mosavuta zambiri zokhudza gulu lanu la chisamaliro chaumoyo la EB ndi EB.
EB kulumikizana mwachangu komanso mwadzidzidzi ndi chithandizo
Pakagwa ngozi yachipatala (ngati mukudwala kwambiri, mwavulala, kapena pali chiopsezo ku moyo wanu) nthawi zonse imbani 999 kapena pitani ku dipatimenti ya Accident & Emergency (A&E) yapafupi nanu. Kuti mudziwe zambiri za dipatimenti ya A&E yapafupi nanu chonde pitani patsamba la NHS.
Chisamaliro chachangu
Kuti mupeze chithandizo chamankhwala chadzidzidzi - chokhudzana ndi EB kapena chosagwirizana ndi EB - imbani 111 kapena funsani dokotala wanu wapafupi. Ngati mulibe zambiri zolumikizirana nawo, chonde pitani patsamba la 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 lazachipatala la EB.
Ngati mulibe khadi kapena mukufuna chizindikiro cha katundu, mutha kupempha khadi polumikizana 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
Kumbukirani kuti Gulu Lothandizira Anthu la DEBRA EB lilipo kuti lipereke chithandizo chosakhala chachipatala komanso kuti likuthandizeni kupeza chithandizo choyenera chaumoyo Lolemba-Lachisanu 9am-5pm.
EB ntchito zapadera zachipatala
Kuti mudziwe zambiri komanso tsatanetsatane wolumikizirana ndi malo anayi azaumoyo a NHS EB omwe ndi abwino kwambiri komanso ntchito ya Scotland EB, chonde pitani patsamba lathu la EB specialist healthcare.
Ngati mukufuna kudziwa zambiri, kapena thandizo loti mupite ku chipatala chapadera cha EB, chonde lemberani gulu lathu lothandizira anthu ammudzi la EB.
EB kasamalidwe ka odwala kwa akatswiri azaumoyo
Kuti mupeze mfundo zofunika komanso malangizo othandizira odwala omwe ali ndi EB, chonde pitani patsamba lathu la kasamalidwe ka odwala a EB.
Tsamba losindikizidwa: Okutobala 2024
Tsiku lobwereza lotsatira: Marichi 2025