Pitani ku nkhani

EB thandizo ndi zothandizira

Mu gawoli mupeza zambiri za EB ndi zothandizira kukuthandizani paulendo wanu wamoyo ndi EB. Chonde gwiritsani ntchito ma tabu omwe ali pansipa kuti muwone zambiri zomwe zakonzedwa malinga ndi mutu kapena gawo la moyo.

Ngati mukukhala ndi EB ndipo mukufuna kudziwa zambiri ndi chithandizo, chonde lemberani EB Community Support Team.

Za EB & DEBRA UK

Dziwani zambiri za epidermolysis bullosa (EB), yomwe imadziwikanso kuti khungu la butterfly. Pezani zambiri za DEBRA UK ndi momwe timathandizira omwe akhudzidwa ndi EB.

Dziwani zambiri

Anthu anayi aima panja, aliyense atanyamula mawu ochititsa chidwi kwambiri pamutu pake.

Kufotokozera EB

Dziwani njira zomwe tingalankhulire ndi ena za EB, kaya ndi kusukulu, kuntchito, ndi anzathu, kapena polankhula ndi akatswiri.

Dziwani zambiri

Patebulo pamakhala bukhu lotseguka lokhala ndi cholembera pamasamba ake, pambali pa kope lodzaza ndi zolemba zolembedwa pamanja. Chakumapeto, pali shelufu ya mabuku.

Maphunziro & maphunziro

Pa gawo lililonse la maphunziro, pamakhala thandizo lochokera ku Gulu Lothandizira Anthu la DEBRA UK la EB ndi mabungwe ena kuti awonetsetse kuti mwana wanu akusamalidwa bwino pazosowa zake za EB.

Dziwani zambiri

Ophika mu khichini yowala mopepuka amakonza chakudya mosamalitsa ndi kukonza mbale pansi pa kuwala kofewa kwa nyali zolendewera.

Ntchito & ntchito

Phunzirani za zosankha za ntchito za anthu omwe ali ndi EB ndi owasamalira. Dziwani momwe mungayendetsere msika wa ntchito ndikupeza chithandizo chomwe mukufuna.

Dziwani zambiri

Chikwangwani cholembedwa "EMERGENCY" chimakongoletsa kunja kwa nyumba ya njerwa zofiira.

Zadzidzidzi & chisamaliro chachangu

Khalani okonzekera zadzidzidzi ndi kalozera wathu wa odwala EB. Pezani zambiri zadzidzidzi kuti muteteze inu ndi okondedwa anu. Muzachipatala nthawi zonse imbani 999 kapena pitani ku A&E yapafupi ndi inu.

Dziwani zambiri

Silhouette ya munthu yemwe wakhala m'mphepete mwa nyumba, kuyang'ana malo dzuwa likamalowa.

Ubwino wamalingaliro

Limbikitsani moyo wanu wamalingaliro ndi malangizo othandiza ndi malangizo. Pezani mabungwe othandizira ndi mabungwe omwe angapereke chithandizo chamankhwala cha EB.

Dziwani zambiri

Njanji za njanji zimafikira patali pansi pa thambo lomwe kuli mitambo pang’ono, ndipo dzuŵa likuloŵa m’chizimezime.

Kutha kwa moyo ndi chithandizo chakufa

Pezani thandizo lothandizira komanso lokhudzidwa la EB lothandizira imfa asanamwalire komanso pambuyo pake, ndi zothandizira kuchokera ku mabungwe ena omwe angathandize.

Dziwani zambiri

Azimayi awiri ndi mwana akusewera limodzi bulangete lokongola m'paki yomwe ili ndi mitengo yamaluwa a maluwa.

Mabanja & osamalira

Pezani zambiri ndi chithandizo chomwe mungafune ngati wosamalira wina yemwe ali ndi EB. Phunzirani momwe mungasamalire zomwe zikuchitika komanso kupeza zinthu zothandiza.

Dziwani zambiri

Munthu akulemba manotsi pambali pa zida zosiyanasiyana, kuphatikizapo makina ojambulira kuthamanga kwa magazi ndi pulse oximeter.

Health

Dziwani zambiri zaposachedwa ndi malangizo pa EB Health. Dziwani zambiri za njira zabwino zopezera thanzi labwino komanso kukhala ndi thanzi labwino.

Dziwani zambiri

M'NYUMBA yapatchuthi ya DEBRA yokhala ndi denga loyera lokwera ili pa kapinga waudzu pansi pa thambo loyera la buluu.

Nyumba Zatchuthi za DEBRA

Dziwani za malo opumira otsika mtengo komanso ofikika m'mapaki ena otchuka komanso okongola a nyenyezi zisanu ku UK.

Dziwani zambiri

Kiyi imayikidwa mu loko ya chitseko, pamene makiyi awiri owonjezera amalendewera pa keyring imodzi. Khomo ndi lotseguka pang'ono, ndikuwonetsetsa kumbuyo kwakunja kobiriwira.

Thandizo la nyumba

Thandizo la nyumba kwa gulu la EB. Phunzirani za mapulogalamu ndi zothandizira zomwe zingathandize kupeza njira zotetezeka komanso zopezeka panyumba.

Dziwani zambiri

Dokotala wovala chijasi choyera amapereka chithandizo, atagwira dzanja la wodwala modekha patebulo losaoneka bwino, ndi bolodi lopukutira pambali pake.

Kusamalira chithandizo chamankhwala

Phunzirani momwe mungayang'anire zovuta pakuwongolera chithandizo chamankhwala cha EB, ndikupeza chithandizo chamankhwala cha EB chomwe chingakuthandizeni. Pezani malangizo a akatswiri, malangizo ndi chithandizo.

Dziwani zambiri

Ndalama ndizofunika

Kukhala ndi EB kungakhale cholemetsa chandalama, koma pali upangiri, mapindu, ndi chithandizo chandalama cha EB chothandizira kuchepetsa ndalama zanu.

Dziwani zambiri

Kamtsikana kakang'ono akusewera mosangalala pakati pa matope akuluakulu a sopo atazunguliridwa ndi anthu pamwambo wa mamembala a DEBRA UK.

Thandizo la anzawo & zochitika

Dziwani zabwino za chithandizo cha anzanu. Lumikizanani ndi ena, gawanani zomwe mwakumana nazo, ndikusangalala ndi zochitika zapadera za mamembala a DEBRA.

Dziwani zambiri

Katswiri wa zachipatala amadula bandejiyo pa mwendo wa munthu pa pepala la buluu.

Chithandizo & kasamalidwe

Dziwani zambiri zamankhwala ndi kasamalidwe ka EB. Phunzirani njira zothandizira kuchepetsa zizindikiro ndikuwongolera thanzi labwino.

Dziwani zambiri

Anthu awiri atakhala patebulo akukambirana za ntchito.

Kupeza chisamaliro cha anthu

Chitsogozo pa chisamaliro cha anthu ndi kupitiriza chithandizo chamankhwala, ndi chithandizo chomwe mungathe kulandira ngati munthu yemwe ali ndi EB.

Dziwani zambiri

Dokotala wovala malaya oyera ndi stethoscope pakhosi ali ndi foni yamakono.

Kwa akatswiri

Limbikitsani luso lanu laukadaulo ndi chuma cha EB. Dziwani zambiri, dziwani, ndikulumikizana ndi akatswiri ena amgulu la EB.

Dziwani zambiri

Munthu akulemba pa laputopu patebulo, ndi foni yamakono ndi kope lotseguka lomwe lingathe kufika.

Zoonjezera zothandizira

Dziwani zambiri, kuphatikiza kuyendetsa galimoto ndi EB, thandizo kwa nzika zomwe sizikhala ku UK, kukhala ndi EB mutakwanitsa zaka 60, ndi mabuku a gulu la EB.

Dziwani zambiri

Anthu anayi, kuphatikiza munthu m'modzi wapa njinga ya olumala, amacheza pamalo pomwe pa Weekend ya Mamembala a DEBRA ali ndi chikwangwani chonena za Bullen Healthcare kumbuyo.

Mgwirizano wa DEBRA

Zambiri zokhudzana ndi mabungwe ena omwe timagwira nawo ntchito, kuti tithe kupereka chithandizo ndi zinthu zatsopano kwa gulu la EB zomwe mwina sangakhale nazo.

Dziwani zambiri

Mapazi atatu pa thanthwe amafotokoza nkhani ya banja: nsapato zazikulu, nsapato za ana, ndi nsapato zazikulu. Nsapato zazing'ono za ana zimakhala pakati pawo.

Kulera

Werengani zambiri

Mkazi akunyamula mwana wakhanda m’manja mwake.

Ubwana

Werengani zambiri

Achinyamata asanu akuima motsutsana ndi mwala, ovala mosasamala, aliyense atatengeka ndi mafoni awo.

achinyamata akuluakulu

Werengani zambiri

Banja la anthu anayi likuwoloka msewu, mayi ali ndi mwana ndipo mwamuna akuyenda pambali pake ndi mtsikana wamng'ono.

Akuluakulu

Werengani zambiri

Njanji za njanji zimafikira patali pansi pa thambo lomwe kuli mitambo pang’ono, ndipo dzuŵa likuloŵa m’chizimezime.

Mapeto a moyo

Werengani zambiri

Umembala wa DEBRA

Kodi mumadziwa...?

Mutha kukhala membala wa DEBRA UK ngati mukukhala ndi EB kapena kuthandiza wina yemwe ali ndi EB: makolo, osamalira, achibale, akatswiri azachipatala ndi ofufuza. Umembala ndi waulere ndipo umakupatsani mwayi wothandizidwa, mwayi wochitapo kanthu, ndi zochitika kuti mulumikizane ndi ena agulu la EB.

Khalani membala