Zambiri & zofalitsa

DEBRA imapanga timabuku tambirimbiri komanso zida zapaintaneti zomwe zimapangidwa kuti zipatse aliyense kukhala ndi EB, kuphatikizapo anthu, mabanja ndi osamalira, mfundo zodalirika.

• Za EB
• Ma sheet owona
• Kwa makolo, masukulu ndi magulu osewerera
• EB mabuku
• Zina
• Malangizo Othandizira Odwala

Kugwira ntchito ndi akatswiri EB anamwino ndi NHS, kuwunika kofala kwa zofalitsa zonse kukuchitika pakali pano kuti onse azitha kupezeka mosavuta pa intaneti, pomwe adzawonjezedwa pamndandanda womwe uli pansipa.

 

Za EB

• EB ndi chiyani? infographic
• EB ndi chiyani? kapepala
• Ndili ndi EB makhadi azachipatala mwadzidzidzi
• EB simplex Dowling Meara (© GOSH NHS Foundation Trust. Yolembedwa ndi Clinical Namwino Katswiri wa Epidermolysis Bullosa ndi DEBRA mogwirizana ndi Gulu la Chidziwitso cha Ana ndi Banja ku GOSH)
• Mild dystrophic EB (© GOSH NHS Foundation Trust. Yolembedwa ndi Clinical Namwino Katswiri wa Epidermolysis Bullosa ndi DEBRA mogwirizana ndi Gulu la Chidziwitso cha Ana ndi Banja ku GOSH)
• Kindler syndrome (© Birmingham Children's Hospital NHS Trust, kupezeka pano mwa chilolezo cha Birmingham Children's Hospital EB Nursing Team ndi Birmingham Children's Hospital Family Health Information Centre)

 

Ma sheet owona

• kulimbikitsa
• Kufunsira Chilolezo cha Lumala Living Allowance (DLA)- ngati mwana wanu ali ndi EB, akhoza kulandira DLA, yomwe ndi phindu lothandizira ndi ndalama zowonjezera zomwe zimadza chifukwa chokhala ndi vuto kapena chilema. Mukhoza kukopera fomu Pano. DLA ndi yopanda msonkho. Mutha kuyitanitsa ngakhale mutagwira ntchito kapena banja lanu lili ndi ndalama kapena ndalama zomwe zikubwera. Lumikizanani ndi Gulu Lothandizira Anthu Kapena kuyitana 01344 771961 (chisankho 1) ngati mukufuna thandizo ndi pempho kapena thandizo lodzaza fomuyo.
• Malipiro achindunji: chisamaliro ndi chithandizo
• Kodi malipiro achindunji ndi chiyani?
• Malipiro achindunji: kalozera wamagalimoto
• Maphunziro - kuyambira kapena kusintha masukulu
• Maphunziro - koleji 
• The Equality Act (2010)
• Kuyang'anira mapazi anu
• Malangizo a Podiatry pamapazi a EB
• Kusambira ndi EB
• Kuzizizira pa kutentha
• Kusamutsira ku Malipiro Odziyimira Pawokha (PIP)
• Mtengo wa chithandizo cha moyo
• Ubwino wamalingaliro ndi thanzi labwino

  

Mukhozanso kukhala ndi chidwi ndi masambawa pa webusaiti yathu

• Zakudya ndi zakudya
• Kusamalira khungu ndi mabala
• Ululu & Itch
• Thandizo kwa inu

 

Zambiri za makolo, ana, masukulu & magulu osewera

• Kusamalira mwana watsopano wokhala ndi EB
• Zakudya zopatsa thanzi kwa ana omwe ali ndi EB
• Zakudya kwa ana opitirira chaka chimodzi
• EB ya Makolo, Masukulu ndi Magulu Osewerera
• Malangizo kwa Ana omwe ali ndi EB m'sukulu (za Maphunziro Ogwira Ntchito) (© Birmingham Children's Hospital NHS Trust, ikupezeka pano mwa chilolezo cha Birmingham Children's Hospital Occupational Therapy Team)
• DEBRA mbidzi- Buku la ana azaka 2-7 omwe ali ndi EB ndi mabanja awo, magulu amasewera ndi masukulu.

 

Mabuku a EB

Onani mndandanda wa mabuku athu olembedwa ndi mamembala a gulu la EB, kuphatikiza mabuku a ana ndi akulu.

Mabuku olembedwa ndi gulu la EB

  

Zina

• British Skin Foundation

 

Malangizo Othandizira Odwala

Timapereka ndalama Malingaliro a kampani DEBRA International Pulogalamu ya Clinic Practice Guidelines (CPGs), yomwe imagwira ntchito ndi anzawo padziko lonse lapansi kuti ipatse akatswiri ndi odwala chitsogozo chabwino kwambiri komanso upangiri wowongolera mbali zosiyanasiyana za EB.

Mitu yomwe ikufunsidwa ndi:

Kusamalira phazi: Kusamalira misomali ya Dystrophic DOWNLOAD	Kusamalira phazi: Hyperkeratosis (callus) kusamalira akuluakulu omwe ali ndi EB DOWNLOAD
Kusamalira phazi: Malangizo a nsapato kwa akuluakulu omwe ali ndi EB DOWNLOAD	Kusamalira phazi: Malangizo a nsapato kwa makolo omwe akusamalira mwana yemwe ali ndi EB DOWNLOAD
Kuzindikira kwa labotale DOWNLOAD	Thandizo lantchito: Kwa akuluakulu omwe ali ndi EB DOWNLOAD
Thandizo lantchito: Kwa makolo omwe akusamalira mwana yemwe ali ndi EB DOWNLOAD	Chisamaliro cha Psychosocial: Kwa akuluakulu omwe ali ndi EB DOWNLOAD
Chisamaliro cha Psychosocial: Kwa makolo omwe akusamalira mwana yemwe ali ndi EB DOWNLOAD	Chisamaliro cha Psychosocial: Thandizo lochokera ku gulu lanu la EB DOWNLOAD
Kusamalira khungu ndi mabala: Kwa akuluakulu omwe ali ndi EB ndi owasamalira DOWNLOAD	Kusamalira khungu ndi mabala: Kwa makolo omwe akusamalira mwana yemwe ali ndi EB *zikubwera posachedwa*
Kusamalira khungu ndi mabala: Thupi labwino & khungu DOWNLOAD

kukaona Malingaliro a kampani DEBRA International Webusaitiyi kuti mudziwe zambiri komanso kutsitsa mitundu yonse ya akatswiri omwe amagwira ntchito ndi EB komanso anthu okhala ndi EB.

 

Chodzikanira

Zomwe zili patsamba lino sizinali zongosintha upangiri wazachipatala. Zambiri zimaperekedwa pazambiri zokha. Ngakhale kuyesayesa koyenera kwapangidwa kuwonetsetsa kuti zomwe zili patsambali zinali zolondola panthawi yomwe idasindikizidwa, sitivomereza kuti tili ndi cholakwika chilichonse, zomwe zasiyidwa kapena zosokeretsa patsamba lino kapena patsamba lililonse lomwe mutha kulowa. ulalo patsamba lino.

Kugwiritsa ntchito kapena kugawa zidziwitso pa www.debra.org.uk ili pakufuna kwa wogwiritsa ntchito kapena wina aliyense wotsatira ndipo DEBRA siyitenga udindo uliwonse pakugwiritsa ntchito kapena zotsatira zake.