Kev saib xyuas EB: qhov muag, kho hniav, phais thiab kev txhawb nqa qog noj ntshav
Nplooj ntawv no muab cov ntaub ntawv qhia txog kev nkag mus rau kev saib xyuas kev noj qab haus huv tshwj xeeb thiab cov ntaub ntawv rau kev kho mob epidermolysis bullosa (EB) qhov muag, kho hniav, phais, thiab kev tswj xyuas mob qog noj ntshav. Yog tias koj tab tom nrhiav lwm cov ntaub ntawv kho mob EB thiab kev tswj xyuas, xws li kev taw qhia ntawm qhov mob thiab khaus khaus, thov paub ntau ntxiv ntawm no.
txheem
Kev kho qhov muag rau EB
EB thiab kho hniav
Cancer thiab EB Management
Kev phais thiab rov ua haujlwm hauv EB
Kev kho qhov muag rau EB
Yog xav paub txog kev kho qhov muag, thov nrhiav tswv yim thiab kev txhawb nqa los ntawm koj Pab pawg kws kho mob tshwj xeeb EB. Peb xav kom koj hu rau koj pab neeg kho mob yog tias koj muaj lus nug.
Yog tias koj tam sim no tsis nyob hauv kev saib xyuas ntawm EB cov kws kho mob tshwj xeeb, ces koj yuav tsum nug koj tus kws kho mob kom xa mus. Thov nco ntsoov qhov kev xa mus yog dawb - tsis muaj nqi rau koj lossis koj tus kws kho mob.
Txhawm rau nrhiav cov ntsiab lus ntawm koj tus GP hauv zos, thov mus saib NHS lub vev xaib.
Peb lub vev xaib kuj muaj cov lus qhia ntxiv rau tswj kev kho mob nrog EB, thiab cov ntaub ntawv hais txog txhua yam ntau hom EB, yog tias koj xav tau.
Koj tseem tuaj yeem tiv tauj peb EB Pab Pawg Pabcuam Zej Zog. Peb nyob ntawm no los pab txawm li cas los peb tuaj yeem nrog cov ntaub ntawv, kev taw qhia thiab kev tawm tswv yim rau EB zej zog.
Cov peev txheej ntxiv
Clinical Practice Guidelines (CPGs)
CPGs ntawm ntau lub ntsiab lus muab cov lus pom zoo rau thaj chaw saib xyuas rau cov neeg nyob nrog EB, tsom rau ob tus kws kho mob thiab cov neeg muaj EB thiab lawv tsev neeg.Great Ormond Street Tsev Kho Mob (GOSH)
Cov ntaub ntawv hais txog kev saib xyuas EB muaj los ntawm GOSH thiab NHS, suav nrog qee cov lus qhia txog kev saib xyuas qhov muag.
EB thiab kho hniav
Yog tias koj xav tau kev txhawb nqa ntxiv nrog kev kho hniav thiab EB, thov nrhiav tswv yim thiab kev txhawb nqa los ntawm koj Pab pawg kws kho mob tshwj xeeb EB. Peb xav kom koj hu rau koj pab neeg kho mob EB yog tias koj muaj lus nug txog kev kho hniav.
Yog tias koj tseem tsis tau nyob hauv kev saib xyuas ntawm ib lub chaw tshwj xeeb EB, koj yuav tsum nug koj tus kws kho mob kom xa mus.
Thov nco ntsoov qhov kev xa mus yog dawb - tsis muaj nqi rau koj lossis koj tus kws kho mob. Txhawm rau nrhiav cov ntsiab lus ntawm koj tus GP hauv zos, thov mus saib NHS lub vev xaib.
Yog tias koj xav tau kev taw qhia ntxiv txog kev nkag mus rau cov kws kho mob tshwj xeeb kom koj tuaj yeem nkag mus saib xyuas los ntawm ib qho ntawm EB centres, thov mus ntsib peb. tswj nplooj ntawv kho mob.
Raws li ib txwm, thov hu rau DEBRA EB Community Support Team yog tias koj xav tau kev taw qhia lossis kev txhawb nqa ntxiv.
Cancer thiab EB Management
Cov neeg muaj EB tuaj yeem muaj kev pheej hmoo ntau dua ntawm kev mob qog noj ntshav ntawm daim tawv nqaij. Txhawm rau kom tau txais kev txhawb nqa koj xav tau los tswj mob qog noj ntshav raws li ib tus neeg nyob nrog EB, thov nrhiav tswv yim thiab kev txhawb nqa los ntawm koj Pab pawg kws kho mob tshwj xeeb EB. Peb pom zoo kom koj tham nrog koj pab neeg EB, vim lawv yog cov kws tshaj lij los pab qhia koj txog qhov xwm txheej no thiab teb cov lus nug.
Yog tias koj tam sim no tsis nyob hauv kev saib xyuas ntawm EB cov kws kho mob tshwj xeeb, ces koj yuav tsum nug koj tus kws kho mob kom xa mus. Thov nco ntsoov qhov kev xa mus yog dawb - tsis muaj nqi rau koj lossis koj tus kws kho mob.
Txhawm rau nrhiav cov ntsiab lus ntawm koj tus GP hauv zos, thov mus saib NHS lub vev xaib.
Peb lub vev xaib kuj muaj cov ntaub ntawv ntawm txhua hom EB yog koj tab tom nrhiav kom paub ntxiv.
Ntawm no ntawm DEBRA UK, koj tuaj yeem tiv tauj peb EB Pab Pawg Pabcuam Zej Zog. Ntxiv rau txhua qhov kev txhawb nqa uas peb tuaj yeem muab tau - xws li kev txhawb nqa nyiaj txiag los ntawm cov nyiaj pab, thiab cov txiaj ntsig zoo li muab kev so ntawm peb. zoo nkauj ntau lub tsev so, peb kuj tseem nyob ntawm no los muab kev txhawb siab, kev taw qhia thiab kev tawm tswv yim yog tias koj xav tau.
Cov peev txheej ntxiv
Clinical Practice Guidelines (CPG) rau kev tswj mob qog noj ntshav
Kuj tseem muaj EB CPG ntawm kev tswj mob qog noj ntshav. Qhov no yog tsom rau tsis yog cov kws kho mob nkaus xwb tab sis cov neeg nyob nrog EB thiab lawv tsev neeg thiab. Nws suav nrog kev kuaj mob qog noj ntshav thiab kev tswj hwm los pab txhim kho lub neej zoo.Great Ormond Street Tsev Kho Mob (GOSH)
Cov ntaub ntawv hais txog EB kev saib xyuas muaj los ntawm GOSH thiab NHS, suav nrog kev tswj xyuas mob qog noj ntshav.Kev phais thiab rov ua haujlwm hauv EB
Ib yam li lwm yam kev saib xyuas tau hais tseg, thov nrhiav tswv yim thiab kev txhawb nqa los ntawm koj Pab pawg kws kho mob tshwj xeeb EB yog tias koj xav tau kev txhawb nqa nrog kev npaj rau kev phais lossis rov qab los. Yog tias koj muaj lus nug txog kev phais, nws yog qhov zoo tshaj uas koj hu rau koj pab neeg kho mob EB.
Yog tias koj tam sim no tsis nyob hauv kev saib xyuas ntawm EB cov kws kho mob tshwj xeeb, ces koj yuav tsum nug koj tus kws kho mob kom xa mus. Thov nco ntsoov qhov kev xa mus yog dawb - tsis muaj nqi rau koj lossis koj tus kws kho mob.
Txhawm rau nrhiav cov ntsiab lus ntawm koj tus GP hauv zos, thov mus saib NHS lub vev xaib.
Koj tuaj yeem nrhiav cov ntaub ntawv hais txog txhua hom EB ntawm peb lub vev xaib, nrog rau kev txuas mus rau txhua qhov EB Clinical Practice Guidelines muab cov lus pom zoo rau ntau qhov chaw kho mob.
Yog tias koj tab tom nrhiav lwm yam kev taw qhia, kev txhawb nqa lossis kev tawm tswv yim, thov hu rau DEBRA EB Community Support Team. Peb nyob ntawm no los pab txawm peb ua tau.
Nplooj ntawv luam tawm: Lub Kaum Hli 2024
Hnub tshuaj xyuas tom ntej: Lub Yim Hli 2026