Cov ntaub ntawv xwm txheej kub ntxhov rau cov neeg mob EB
Nplooj ntawv no qhia txog cov ntaub ntawv tseem ceeb uas koj yuav xav tau yog tias koj nyob hauv tus kab mob epidermolysis bullosa (EB), lossis tsis yog-EB ntsig txog kev kho mob xwm txheej ceev, ntxiv rau cov ntaub ntawv tseem ceeb EB uas tsis yog-EB cov kws kho mob tshwj xeeb yuav tsum paub thaum kho koj.
Tseem muaj peb daim npav ntaub ntawv kho mob uas koj siv tau los qhia cov ntaub ntawv txog koj EB thiab pab pawg neeg kho mob EB tau yooj yim.
EB hu xovtooj ceev thiab ceev thiab txhawb nqa
Thaum muaj xwm txheej ceev (yog tias koj mob hnyav, raug mob, lossis muaj kev pheej hmoo rau koj lub neej) ib txwm hu rau 999 lossis mus rau koj lub chaw haujlwm xwm txheej ceev (A&E) ze tshaj plaws. Yog xav nrhiav cov ntaub ntawv ntawm koj lub chaw haujlwm A&E ze tshaj plaws thov mus saib lub vev xaib NHS.
Kev kho mob ceev ceev
Yog xav tau kev kho mob ceev - EB lossis tsis muaj feem cuam tshuam nrog EB - hu rau 111 lossis tiv tauj koj tus kws kho mob hauv zos. Yog tias koj tsis muaj lawv cov ntaub ntawv tiv tauj, thov mus saib lub vev xaib NHS.
Cov ntaub ntawv kho mob
Vim tias EB yog qhov tsis tshua muaj tshwm sim, tsis muaj kev lees paub tias tus kws kho mob lossis GP kho koj yuav tau hnov los yog nkag siab nws. Tej zaum lawv yuav xav tau cov ntaub ntawv tshwj xeeb EB thiab cov lus qhia ntxiv, thiab lawv yuav xav tau hu rau tus kws kho mob dermatologist lossis tus tswv cuab ntawm pab pawg kws kho mob tshwj xeeb EB.
Txhawm rau kom ntseeg tau tias lawv muaj cov ntaub ntawv raug thiab cov ntaub ntawv tiv tauj peb xav kom koj ib txwm hais tias koj muaj EB thaum tham nrog tus kws kho mob, txawm tias vim li cas koj pom lawv tsis cuam tshuam ncaj qha rau koj EB. Qhov no yuav pab xyuas kom lawv thiab lawv pab pawg ua cov nyiaj pab tsim nyog, piv txwv li, zam cov nplaum nplaum, tsis txhob zawv zawg thaum hloov koj, siv ceev faj thaum tshem cov khaub ncaws thiab lwm yam.
Peb kuj xav kom koj ib txwm qhia koj daim npav EB cov ntaub ntawv kho mob.
Yog tias koj tsis muaj lossis koj xav tau daim ntawv cim npe nqa khoom, koj tuaj yeem thov daim npav los ntawm kev tiv tauj DEBRA UK Membership Team.
Xwb, koj tuaj yeem rub tawm daim npav cuam tshuam hauv qab no thiab luam tawm lossis khaws nws ua duab hauv koj lub xov tooj. Thov xaiv ib qho cuam tshuam nrog EB chaw kho mob uas koj nyob hauv. Yog tias koj nyob hauv kev saib xyuas los ntawm pab pawg saib xyuas kev noj qab haus huv hauv cheeb tsam EB lossis lwm qhov kev pabcuam kev noj qab haus huv hauv nroog, koj tuaj yeem sau cov ntsiab lus tseem ceeb ntawm cov ntawv dawb.
Sau lossis khaws koj daim npav hauv koj lub xov tooj thaum muaj xwm txheej ceev
“Ua tsaug rau koj xa kuv daim npav 'Kuv muaj EB'. Thaum kuv pom nws ntawm kev teem caij kho mob tsis ntev los no, nws tau coj kuv tus EB tiag tiag. Hauv tag nrho kuv lub neej qhov no yog thawj zaug qhov no tau tshwm sim. "
Anon
Thov nco ntsoov tias DEBRA EB Community Support Team muaj rau kev txhawb nqa uas tsis yog kev kho mob thiab los pab coj koj mus rau cov kev pabcuam kev noj qab haus huv tsim nyog hnub Monday-Friday 9 teev sawv ntxov - 5 teev tsaus ntuj.
EB cov kev pab kho mob tshwj xeeb
Yog xav paub ntxiv thiab xav paub ntxiv txog plaub lub chaw kho mob NHS EB zoo tshaj plaws thiab kev pabcuam Scottish EB, thov mus saib peb nplooj ntawv ntawm EB kws kho mob tshwj xeeb.
Yog tias koj xav tau cov ntaub ntawv ntxiv, lossis xav tau kev pab txhawb nqa los ntawm kev xa mus rau chaw kho mob tshwj xeeb EB, thov hu rau peb Pab Pawg Txhawb Nqa Zej Zog EB.
Kev tswj hwm tus neeg mob EB rau cov kws kho mob
Yog xav nrhiav cov ntaub ntawv tseem ceeb thiab cov lus qhia los tswj cov neeg mob uas muaj tus kab mob EB, thov mus saib peb nplooj ntawv tswj cov neeg mob EB.
Nplooj ntawv luam tawm: Lub Kaum Hli 2024
Hnub tshuaj xyuas tom ntej: Lub Peb Hlis 2025