Kugwiritsa ntchito umembala wanu wa DEBRA

Chithandizo kwa anthu omwe ali ndi mitundu yonse ya EB

athu EB Community Support Team ali pano kuti akuthandizeni pa gawo lililonse la moyo ndi EB. Kuyambira ku matenda oyamba mpaka kukuthandizani pantchito, kukuthandizani kupeza Blue Badge kapena kukhala ndi thandizo lomwe mukufuna mukamayenda m'mabwalo a ndege.

Gulu lathu limapereka chithandizo chomvetsera, malangizo a akatswiri, komanso chithandizo chothandiza mukachifuna. Muthanso kugwiritsa ntchito tsamba lathu lawebusayiti Zambiri ndi zinthu za EBndipo Imbani Help Line yathu ya EB pa 01344 577689, likupezeka Lolemba-Lachisanu, 8am-5:30pm.

Kulumikizana ndi anthu ammudzi ndi zochitika

Timapereka zochitika zosiyanasiyana zapadera kwa mamembala chaka chonse, zomwe zimakupatsani mwayi wolumikizana ndi ena pamasom'pamaso kapena pa intaneti.

Gawani zomwe mwakumana nazo, mverani akatswiri a EB, kambiranani nkhani zofunika kwa anthu ammudzi wa EB, ndipo sangalalani kukhala limodzi ndikupanga mabwenzi atsopano.

Matchuthi apadera

Sangalalani ndi kukhala m'nyumba yathu mitundu yokongola ya nyumba za tchuthi, yochokera ku UK m'mapaki 5 * omwe adalandira mphotho, pamitengo yotsika mtengo.

Pofuna kuthetsa mavuto ena okhudzana ndi kukonzekera tchuthi kwa mabanja omwe ali ndi EB, tasintha nyumba zathu za tchuthi kuti zigwirizane ndi zosowa zosiyanasiyana za anthu ammudzi wa EB. 

Mwayi wophatikizidwa

Timaika mawu a mamembala athu pakati pa chilichonse chomwe timachita, ndipo pali njira zambiri zosangalatsa zochitira nawo.

Mutha kutenga nawo mbali m'mapulojekiti apadera a mamembala, kuthandiza kukonza tsogolo la ntchito zathu za EB, kusankha kafukufuku yemwe tidzathandizira pambuyo pake, ndi zina zambiri.

Thandizo la ndalama

Pezani ndalama zothandizira zinthu kuti zikuthandizeni kukhala ndi moyo wabwino ndi EB, malangizo azachuma, komanso ukadaulo wa gulu lathu kuti zikuthandizeni kupeza maubwino a boma omwe mungakhale oyenerera.

Khalani oyamba kudziwa

Ndi maimelo athu ndi makalata athu osindikizidwa, mupeza nkhani ndi zinthu zatsopano kwa anthu omwe ali ndi EB ndikumva za mankhwala atsopano akapezeka. Muthanso kupeza zonse Zambiri ndi zinthu za EB nthawi iliyonse.

Zoonjezera zothandizira

Tsitsani kapena pemphani zinthu zina zothandiza kwa anthu omwe ali ndi EB, mabanja awo ndi osamalira awo:

'Ndili ndi EB' khadi

Khadi lachipatala la EB

Mabuku olembedwa ndi gulu la EB

Khadi Yobisika Yolemala Mpendadzuwa ndi lanyard

Kodi mukudziwa wina aliyense amene amakhala ndi EB yemwe si membala wa DEBRA?

Tikakhala ndi mamembala ambiri, zimakhala zosavuta kwa ife kuchita izi:

• Onetsani kuchuluka kwa EB, kuti tithe kutsimikizira kuchuluka kwa anthu omwe akhudzidwa.
• Limbikitsani kafukufuku wabwino komanso kupeza ndalama zogulira mankhwala atsopano ndikupeza njira zatsopano zochiritsira.
• Pemphani boma, NHS, ndi mabungwe ena kuti akonze mautumiki ndi ufulu wa anthu omwe ali ndi EB.