Pitani ku nkhani

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.

Pezani dipatimenti ya A&E yapafupi nanu

 

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.

Pezani GP wanu wapafupi

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'.

Kutsogolo kwa khadi lazidziwitso zachipatala ndi zadzidzidzi kwa odwala omwe ali ndi epidermolysis bullosa (EB). Ili ndi khodi ya QR kuti mumve zambiri.

Kubwerera kwa khadi lazidziwitso zachipatala ndi zadzidzidzi kwa odwala omwe ali ndi epidermolysis bullosa (EB). Ili ndi khodi ya QR kuti mumve zambiri.

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.

Zikomo 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.