EB kasamalidwe ka odwala

anthu kukhala ndi EB ndi khungu losweka. Imatha kuchita matuza ndi kung'ambika mosavuta, kuphatikiza pakamwa ndi pakhosi. Funsani wodwalayo kapena banja lawo kuti akupatseni malangizo. Nthawi zambiri amakhala akatswiri. Zambiri pakuwongolera odwala a EB pansipa sizilowa m'malo mwa upangiri wochokera kwa katswiri wodziwa zaumoyo.

Funsani gulu lawo la EB/mlangizi musanayambe njira zowononga.

PEWANI / CHENJEZO	ZINTHU ZINTHU / MALANGIZO
Kupanikizika, kukangana kapena kumeta ubweya	Gwiritsani ntchito njira, monga 'lift and place'
Kufalitsa matuza	Matuza ophulika ndi singano yosabala. Siyani chithuza pamalo ake. Phimbani ndi chobvala chosamata chosamatira.
Zovala zomatira, matepi & ma elekitirodi a ECG	Ngati pakufunika kuchipatala, chotsani ndi Silicone Medical Adhesive Remover kapena 50/50 White Soft Liquid Paraffin. Chotsani pang'onopang'ono ndi njira yobwezera, osati kukweza chovalacho.
Tourniquets	Finyani nthambi mwamphamvu, kupewa kumeta ubweya; ngati kuli kotheka, gwiritsani ntchito padding
Kuthamanga kwa magazi	Ikani pa zovala kapena mabandeji
Thermometers	Gwiritsani ntchito thermometer ya tympanic
Magolovesi opangira opaleshoni	Mafuta nsonga zala, ngati n'koyenera
Kuchotsa zovala	Samalani kwambiri; ngati mwakanidwa, zilowerereni ndi madzi ofunda
matiresi	Gwiritsani ntchito matiresi osasinthasintha, monga Repose
Kuyamwa kwa ndege	Ngati ndi kotheka, gwiritsani ntchito catheter yofewa. Ngati kuyamwa kwa Yankauer kukufunika pakagwa ngozi, gwiritsani ntchito mafuta kunsonga ndipo osayamwa poyikapo. Ikani catheter yoyamwa pa dzino kuti musachotse mkamwa.
Kutsegula maso	Osakakamiza kutsegula; gwiritsani ntchito lubricant ngati kuli kofunikira
Kugwedezeka	Onetsetsani ngati akumwa chakudya kapena mankhwala pakamwa. Mankhwala amadzimadzi ndi zakudya zofewa kapena zakudya zopanda thanzi zingakhale zoyenera. Zakumwa zoziziritsa kukhosi kapena zotentha zitha kukhala zabwino kuposa zotentha.

Pitani patsamba la DEBRA International kuti mutsitse EB Malangizo Othandizira Kachipatala (CPGs), kuphatikizapo chitsogozo cha kusamalira khungu ndi bala.

Tsitsani ma EB CPGs

Latest

Lembetsani ku maimelo a umembala wa DEBRA

Lowani kuti mulandire zosintha kuchokera ku DEBRA za umembala wanu.
Othandizira a DEBRA UK, Paul Glover ndi Martyn Rowley, akweza £ 115,000 kwa mabanja omwe akukhala ndi EB

Lachiwiri pa Seputembara 3, othandizira odzipereka a DEBRA UK Paul Glover ndi Martyn Rowley adalandiridwa ku ofesi yayikulu ya DEBRA UK kukondwerera kupambana kwawo kwakukulu kokweza £115,000 mu 2024 kuthandiza omwe akukhala ndi EB.
DEBRA UK Challenge 2024

Seputembala uno, chonde thandizirani Graeme Souness pazovuta zake za 'BE the difference for EB'.
Graeme Souness CBE ndi Isla Grist akumana ndi banja la Barnaby Webber pa BBC Breakfast

Pa 21 Ogasiti 2024, Wachiwiri kwa Purezidenti wa DEBRA Graeme Souness CBE ndi Isla Grist, omwe amakhala ndi recessive dystrophic EB (RDEB), adawonekeranso pa BBC Breakfast.

Zambiri zadzidzidzi kwa odwala EB

Mauthenga okhudzana ndi zadzidzidzi komanso makadi a 'Ndili ndi EB' oti munyamule nawo kuti mudziwitse akatswiri azachipatala kuti mungafunike chisamaliro chapadera. Dziwani zambiri zazadzidzidzi kwa odwala EB.
Zothandizira azachipatala

Tsambali lili ndi zofunikira kwa asing'anga ndi akatswiri azachipatala omwe akuchiza ndi kuyang'anira odwala EB. Chonde pitani kumalo opangira chidziwitso kuti mupeze zofunikira kwa omwe si azachipatala.
Malangizo Othandizira Odwala

Malangizo a Clinical Practice Guidelines (CPGs) ndi mndandanda wamalingaliro a chisamaliro chachipatala, kutengera umboni wopezedwa kuchokera ku sayansi ya zamankhwala ndi malingaliro a akatswiri. Ma CPG amathandiza akatswiri kumvetsetsa momwe angachitire ndi munthu yemwe ali ndi EB.
Zochitika za akatswiri

Phunzirani mwachindunji kuchokera kwa akatswiri azachipatala komanso akatswiri azachipatala. DEBRA imathandizira zochitika zosiyanasiyana kuti akatswiri apititse patsogolo chidziwitso ndi luso lawo mu EB.
Katswiri wazachipatala

Kugwira ntchito mogwirizana ndi a NHS kuti apereke chithandizo chaumoyo cha EB kwa anthu omwe ali ndi EB. Ma EB Center of Excellence ali ndi magulu osiyanasiyana omwe amapereka chithandizo chamankhwala cha akatswiri a EB.

Ambiri amawerenga

Pezani malo ogulitsa

Pezani sitolo yanu yapafupi ya DEBRA ndikuthandizira kulimbana ndi EB. Masitolo athu amagulitsa zovala zotsika mtengo komanso zapamwamba zomwe timakonda kale, mipando, zinthu zamagetsi, mabuku, zida zakunyumba ndi zina zambiri.
Kusonkhanitsa mipando

Perekani mipando yanu yosafunikira, zinthu zapanyumba ndi zamagetsi pogwiritsa ntchito ntchito yathu yaulere yotolera mipando. Pokhala ndi njira zotetezera, kupereka zinthu zanu sikungakhale kosavuta.
Zinthu zomwe sitigulitsa

Dziwani kuti ndi miyezo yaumoyo ndi chitetezo ndi zilembo zomwe tikufuna komanso zomwe sitingathe kugulitsa.
EB ndi chiyani?

Epidermolysis bullosa (EB) ndi matenda opweteka omwe amatuluka pakhungu popanda mankhwala. Dziwani za mitundu yosiyanasiyana ya EB, zomwe zimayambitsa, zizindikiro ndi mankhwala.
Graeme Souness akusambira English Channel kuti akweze £1.1m kuti athetse ululu wa EB

Graeme Souness, wosewera mpira wakale wapadziko lonse lapansi, manejala, komanso pundit, akusambira English Channel mwezi uno kuti akweze ndalama zokwana £1.1m kuti aletse kuwawa kwa epidermolysis bullosa (EB).
Lumikizanani nafe
Perekani zinthu

Perekani zinthu zanu zomwe munazikonda kale, kuphatikiza zovala, mipando ndi zida zapanyumba kuti zisatayidwe komanso kutithandiza kupeza ndalama zofunika kudzera m'masitolo athu. Dziwani zambiri za momwe mungaperekere zinthu lero.
Tizigwira nafe

DEBRA ikhoza kupitiriza ntchito yake yofunika ndi chithandizo ndi chilimbikitso cha anthu ammudzi komanso ndi khama la antchito ake ndi odzipereka.
Khalani membala

Ngati inu kapena wachibale mukukhala ndi EB, ndinu wosamalira kapena wina amene amagwira ntchito ndi anthu omwe akhudzidwa ndi EB, ndiye kuti mutha kukhala membala wa DEBRA. Dziwani momwe mungachitire.
Nkhani ya Isla

Ndife banja labwinobwino. Ana athu, Isla ndi Emily, amapita kusukulu, amakhala ndi anzawo ndipo amakonda kusewera pa trampoline. Koma m'modzi mwa ana anu akakhala ndi EB, muyenera kutanthauziranso bwino.

Tag mtambo

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