Lub website no siv cov ncuav qab zib kom peb thiaj li muab tau rau koj nrog tus neeg siv tau zoo tshaj plaws. Cov lus qhia hauv qab zib yog cia rau hauv koj tus browser thiab ua haujlwm xws li lees paub koj thaum koj rov qab mus rau peb lub vev xaib thiab pab peb pawg neeg kom nkag siab txog cov chaw hauv lub website koj pom ntau yam ntxim nyiam thiab siv tau.
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.
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 'Kuv muaj EB'.
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.
Download tau koj daim npav kho mob
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
Cov neeg nyob nrog txhua hom EB muaj cov tawv nqaij tawv heev uas tuaj yeem hlwv lossis tsim kua muag nrog me ntsis khob lossis txhuam. Qee tus neeg mob EB tuaj yeem mob pob khaus ntawm lawv txhais tes thiab ko taw nkaus xwb, hos lwm tus tuaj yeem ua pob khaus ntawm lawv lub cev nrog rau lawv ob lub qhov muag, thiab hauv lawv lub qhov ncauj thiab caj pas.
Nws yog ib qho tseem ceeb uas koj nug tus neeg mob, lawv tsev neeg, los yog tus neeg saib xyuas rau cov lus qhia txog lawv tus mob vim lawv feem ntau yog cov kws tshaj lij. Cov ntaub ntawv ntawm kev tswj hwm cov neeg mob EB hauv qab no tsis hloov cov lus qhia los ntawm tus kws kho mob uas tsim nyog.
TSEEM CEEB: Thov tham nrog tus neeg mob EB pab neeg saib xyuas kev noj qab haus huv / tus kws pab tswv yim ua ntej ua cov txheej txheem cuam tshuam.
| Zam / ceev faj | Alternatives/cov lus qhia |
| Lub zog, kev sib txhuam, thiab shearing zog | Siv cov txheej txheem xws li ' nqa thiab qhov chaw'. |
| Tshaj tawm hlwv | Cov hlwv tawg nrog rab koob tsis muaj menyuam, tawm hauv lub hlwv hauv qhov chaw thiab npog nrog kev hnav khaub ncaws tsis muaj menyuam. |
| Adhesive hnav khaub ncaws, tapes & ECG electrodes | Yog tias xav tau kev kho mob, tshem tawm cov hnav khaub ncaws nrog silicone kho mob nplaum tshem tawm lossis 50% kua paraffin, 50% dawb mos paraffin tshuaj pleev. Tshem tawm maj mam nrog cov txheej txheem yob rov qab, tsis yog nqa cov hnav khaub ncaws. |
| Tourniquets | Ntxias ceg kom ruaj, tsis txhob shearing quab yuam; yog tias tsim nyog, siv tshaj padding. |
| Ntshav siab cuffs | Muab cov khaub ncaws los yog ntaub qhwv. |
| Cov Ntsuas Kub | Siv lub ntsuas kub tympanic. |
| Cov hnab looj tes phais | Lubricate lub ntsis ntiv tes yog tias tsim nyog. |
| Tshem cov khaub ncaws | Siv ceev faj heev; yog tias daig, so nrog dej sov. |
| Txumpaj | Siv lub txaj pw uas tsis hloov siab. |
| Airway nqus | Yog hais tias tsim nyog, siv ib tug mos lubricated catheter. Yog hais tias Yankeur suction yuav tsum tau thaum muaj xwm ceev, siv lubrication rau lub ntsis thiab tsis muaj suction ntawm insertion. Muab cov catheter suction rau ntawm tus hniav kom tsis txhob hle lub qhov ncauj. |
| Qhib qhov muag | Tsis txhob yuam qhib; siv cov roj nplua nyeem, yog tias tsim nyog. |
| Nqos | Xyuas seb tus neeg mob puas noj zaub mov lossis tshuaj los ntawm qhov ncauj. Cov tshuaj ua kua thiab cov khoom noj mos lossis cov zaub mov ntshiab yuav tsim nyog. Cov dej txias los yog dej sov yuav zoo dua rau cov dej kub. |
Raws li cov qhov txhab qhib lossis tawv nqaij tuaj yeem kis tau thiab tom qab ntawd yuav tsum tau kho sai kom tsis txhob mob ntxiv thiab puas tsuaj, nws yog ib qho tseem ceeb uas yuav tsum tau ceev faj tiv thaiv kab mob rau cov neeg uas muaj EB.
Yog xav paub ntxiv txog kev qhia txog kev kis kab mob, xws li cov cim qhia ntawm tus kab mob thiab yuav ua li cas yog tias koj pom cov tsos mob ntawm ib qho, thov mus saib peb 'About EB' page.
Yog xav paub ntxiv txog EB daim tawv nqaij thiab kev tu lub qhov txhab, thov download tau lub EB Clinical Practice Guidelines.
EB Clinical Practice Guidelines (CPGs) rau cov kws kho mob
CPGs yog cov lus pom zoo rau kev kho mob zoo raws li cov pov thawj tau txais los ntawm kev tshawb fawb txog kev kho mob thiab cov kws kho mob pom zoo. Lawv tau tsim los pab cov kws kho mob nkag siab txog kev kho cov neeg mob nrog EB.
DEBRA International, lub hauv paus tseem ceeb rau lub network thoob ntiaj teb ntawm ntau tshaj 50 lub teb chaws DEBRA / EB txhawb pab pawg, suav nrog DEBRA UK, tau tsim ntau cov lus qhia, ntau qhov tau txais nyiaj txiag los ntawm DEBRA UK (tus cim los ntawm lub hnub qub *). Txhawm rau paub seb cov CPGs no tau tsim li cas, thov rub tawm EB CPG Fact sheet.
Tus neeg mob taw qhia CPGs
EB CPGs tau tsim tshwj xeeb rau cov kws kho mob tswj hwm cov neeg mob EB; Txawm li cas los xij, tseem muaj lub tsev qiv ntawv ntawm cov neeg mob taw qhia cov qauv muaj rau cov neeg nyob nrog EB, lawv tsev neeg, thiab cov neeg saib xyuas. Cov no tuaj yeem nrhiav tau ntawm DEBRA International lub vev xaib.
Yog tias koj yog ib tus kws kho mob nrog kev paub txog kev tswj hwm EB cov neeg mob thiab koj xav koom nrog kev txhim kho EB CPGs yav tom ntej, thov hu rau peb.