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Abubuwan da suka faru na membobin DEBRA UK

liyafar karshen mako na Membobin DEBRA UK ta cika da jama'a da ke zaune a kusa da teburi, an yi musu ado da kayan teburi masu launin shudi da fari da shaye-shaye iri-iri, a karkashin hasken wuta, wanda ya haifar da yanayi na cikin gida. Babban rukuni na mutane, suna halartar ɗaya daga cikin abubuwan membobin DEBRA UK, suna zaune a zagaye teburi a cikin ɗakin liyafa tare da hasken shuɗi, suna tattaunawa da cin abinci.

Mun san yadda yake da mahimmanci ga membobin ƙungiyar EB su sami damar yin hulɗa da juna, raba gogewa da shawarwari, kulla abota, da yin nishaɗi, duk ba tare da bayyana menene EB ba. 

Wannan shine dalilin da ya sa muka ƙirƙiri wani shiri na al'amuran ƙasa, yanki da kan layi ta yadda al'ummar EB za su iya haɗa cikin gida tare da yin hulɗa mai mahimmanci tare da membobin sauran sassan ƙasar. 

Har ila yau, abubuwan da suka faru suna haifar da dama ga membobi don haɗi tare da Ƙungiyar Tallafin Al'umma ta DEBRA EB da kuma ji daga masana a fannin kiwon lafiya na EB. 

Duba cikakken jerin abubuwan da suka faru na membobinmu

Nemo wani taron

Kullum muna tsara abubuwan da suka faru bisa ga abin da membobinmu suke so da buƙatu. Don haka, idan akwai wani abu da kuke son gani ko ƙasa da shi, ko kuma idan kuna da ra'ayin sabon taron, za mu so mu ji shawarwarinku. Da fatan za a sauke mana imel a membership@debra.org.uk. 

Abubuwan da ke cikin mutum don membobin DEBRA UK

Membobin mu suna rayuwa duk fadin Birtaniya. Kamar yadda da yawa yi ba zauna kusa da juna da kuma ƙananan al'amuran gida ba ko da yaushe m, muna daukar nauyin yankuna daban-daban don haɗa mambobi a lokuta daban-daban na shekara ban da Membobin mu' karshen mako taron kasa.

Karshen mako shine taronmu na kasa, kuma yana bawa membobi damar haɗi tare da sauran mutanen da ke zaune tare da kowane nau'in EB. Mu Za a gudanar da karshen mako na Membobi a ranar 17-18 ga Mayu 2025. 

Wannan taron yana taimaka wa mutanen da za su iya jin ware kuma suna ba da dama don rabawa da koyo daga juna, da kuma saduwa da Ƙungiyar Tallafawa Al'umma ta DEBRA da EB kiwon lafiya da masana bincike. 

Har ila yau, dama ce ga membobin da za su yi nishaɗi tare, a cikin wani wuri mai aminci da ke biyan bukatun mutanen da ke zaune tare da nau'o'in EB daban-daban, amma inda EB ɗin su ba ya buƙatar bayyanawa saboda kowa yana samun kuma fahimtar juna. .

Haɗin membobin DEBRA da ma'aikata a ƙarshen Membobin DEBRA 2024.

Makonnin Mambobi yawanci sun haɗa da sabuntawar bincike na EB akan ayyukan da DEBRA UK ke bayarwa, tarurrukan bita tare da ƙwararrun ma'aikatan jinya na EB, taron jagoranci na memba.  (a bara mun sami musayar safa inda membobin suka raba shawarwarin su don safa da takalmi na abokantaka na EB!), Da kuma ayyukan nishadi gami da ƙwararrun bita, waƙa, rawa da dariya da yawa!   

Baya ga Ƙarshen Ƙarshen Membobi, muna gudanar da wasu abubuwan da suka faru na mutum-mutumi a cikin shekara. Abubuwan da suka faru na baya-bayan nan sun haɗa da ƙarshen mako na 'yancin kai musamman ga membobi masu shekaru 18+ a London, kuma membobi suna haɗa taron a Glasgow. 

Har ila yau, muna da niyyar haɗi tare da membobinmu a wasu abubuwan da suka faru na ɓangare na uku da nune-nunen kamar Naidex, babban taron Burtaniya don ƙarfafawa da tallafawa nakasassu. 

 

“Yana da mahimmancin abin da muke koya daga mutanen da suke magana da rumfa, amma ainihin abin da ke da muhimmanci shi ne saduwa da mutane kamar mu da yin irin waɗannan tattaunawa da kuma irin tattaunawar da ba za ku yi a wani wuri ba! Yana da kyau ka kasance tare da waɗannan mutane kuma ka ji kamar kana cikin wani abu. Wannan shine mafi kyawun abu game da DEBRA a gare ni. "

- Memba na DEBRA UK kuma Jakadiya, Vie Portland suna magana game da mahimmancin ta na Makon Ma'aikatan DEBRA 

Abubuwan kan layi don membobin DEBRA UK

Wadannan abubuwan da suka faru samar da dama ga lga wasu, to share dubaru da kwarewa, da to tattaunawa game da ra'ayoyin da suka shafi batutuwa da dama mai alaka da EB. Mafi mahimmanci, su ma samar da dama to sanin wasu membobin EB jama'a a cikin annashuwa, yanayi na yau da kullun.
Wasu ma'aurata suna zaune a kan kujera, suna murmushi, rike da jariri. Matar tana sanye da rigar rigar rigar, namijin rigar beige da hula, sai jaririn farin kaya.

Mambobin Pitstops

Waɗannan abubuwan na kan layi kyauta suna ba da damar duk membobi, duka iyaye da masu kulawa da waɗanda ke zaune tare da EB, don haɗawa ta hanyar Zuƙowa da raba gogewa da ra'ayoyi game da batutuwan da suka dace da mutanen da ke rayuwa tare da kowane nau'in EB.
Ya koyi
Dr Carina Graham a cikin rigar dakin gwaje-gwaje da safar hannu na zaune kan stool a dakin gwaje-gwaje, tana murmushi. Yana tsaye a gaban kaho mai kwararar laminar cike da kayan aikin lab da kayayyaki iri-iri.

Gidan yanar gizo na Bincike da Lafiya

Waɗannan zaman, wanda Daraktan Bincike na DEBRA na Burtaniya Dr Sagair Hussain ya shirya, dama ce mai kyau don koyo game da batutuwa daban-daban da suka shafi EB, kuma masana sun amsa tambayoyinku.
Ya koyi
David Williams daga Kungiyar Tallafawa Al'umma ta DEBRA EB, suna karbar bakuncin taron maza a karshen mako na Membobi 2024.

Kungiyar Maza DEBRA

Wannan taron rukuni na kan layi na wata-wata don membobi ne masu shekaru 18+ kuma wuri ne mai kyau don rabawa, saurare, kuma kawai magana da wasu maza waɗanda ƙila suna da irin wannan gogewa a gare ku.
Ya koyi
Allon allo mai rubutu da aka liƙa a kai yana karanta "Sanin Dokokin don Jagororin Abubuwan Da Suka Shafi Kan Kan Layi!

Jagororin taron kan layi

Ana gudanar da al'amuran mu na kan layi don taimaka muku haɗi tare da sauran membobin. Don kiyaye kowane zama wuri maraba, tallafi da aminci, muna neman ku bi jagororin mu.
Ya koyi