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.
Kuj tseem muaj peb cov daim npav qhia txog kev kho mob uas koj siv tau yooj yim los qhia cov ntaub ntawv hais txog koj EB thiab pab pawg neeg kho mob EB.
EB hu xovtooj ceev thiab ceev thiab txhawb nqa
Thaum muaj xwm txheej ceev kho mob (yog tias koj mob hnyav, raug mob, lossis muaj kev pheej hmoo rau koj lub neej) nco ntsoov hu rau 999 lossis mus rau koj qhov chaw nyob ze tshaj plaws Accident & Emergency (A&E). Txhawm rau nrhiav cov ntsiab lus ntawm koj lub chaw haujlwm A&E ze tshaj plaws thov mus saib ntawm NHS lub vev xaib.
Kev kho mob ceev ceev
Rau kev kho mob ceev - EB lossis tsis yog-EB cuam tshuam - 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 hauv lub NHS lub vev xaib.
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 ib qho lossis koj xav tau lub nra tag version, koj tuaj yeem thov daim npav los ntawm hu rau DEBRA UK Kev Koom Tes Pab Pawg.
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 cov DEBRA EB Community Support Team muaj kev pab kho mob uas tsis yog kho mob thiab pab kos npe rau koj rau cov kev kho mob tsim nyog hnub Monday-Friday 9 teev sawv ntxov txog 5 teev tsaus ntuj.
EB cov kev pab kho mob tshwj xeeb
Yog xav paub ntxiv thiab tiv tauj cov ntsiab lus rau plaub NHS EB cov chaw kho mob zoo tshaj plaws thiab Scottish EB kev pabcuam, thov mus saib peb nplooj ntawv ntawm EB tus kws kho mob tshwj xeeb.
Yog tias koj xav paub ntau ntxiv, lossis kev txhawb nqa nrog kev xa mus rau EB lub chaw kho mob tshwj xeeb, thov hu rau peb EB Pab Pawg Pabcuam Zej Zog.
Kev tswj hwm tus neeg mob EB rau cov kws kho mob
Txhawm rau nrhiav cov ntaub ntawv tseem ceeb thiab cov lus qhia los tswj cov neeg mob nyob nrog EB, thov mus saib peb EB nplooj ntawv saib xyuas neeg mob.
Nplooj ntawv luam tawm: Lub Kaum Hli 2024
Hnub tshuaj xyuas tom ntej: Lub Peb Hlis 2025