Tsallake zuwa content

Taimakon EB da albarkatu

Bayanin bayanan kwance yana nuna matakan tallafin rayuwa: tsarin iyali, jarirai, ƙuruciya, matasa, girma, aiki, gidaje, kuɗi, walwala, tallafin EB, da ƙarshen tallafin rayuwa.
A cikin wannan sashe za ku sami bayani game da EB da albarkatu don tallafa muku kan tafiya ta rayuwa tare da EB. Da fatan za a yi amfani da shafukan da ke ƙasa don ganin bayanan da aka tsara ta jigo ko matakin rayuwa.
Idan kuna rayuwa tare da EB kuma kuna son ƙarin takamaiman bayani da goyan baya, tuntuɓi Taimakon Al'umma na EB.
DEBRA UK mai nuna shuɗin malam buɗe ido.

Game da EB & DEBRA UK

Ƙara koyo game da epidermolysis bullosa (EB), wanda kuma aka sani da fatar malam buɗe ido. Nemo kuma bayani game da DEBRA UK da yadda muke tallafawa waɗanda EB ta shafa.
Ya koyi
Mutane hudu ne suka tsaya a waje, kowannensu rike da kumfa kala-kala a saman kai.

Bayanin EB

Samun fahimtar hanyoyin da za mu iya yin magana da wasu game da EB, ko a makaranta ne, a wurin aiki, tare da abokai, ko lokacin magana da ƙwararru.
Ya koyi
A kan teburi akwai buɗaɗɗen littafi tare da alƙalami a kan shafukansa, tare da littafin rubutu mai cike da rubutun hannu. A bangon bango, rumbun littattafai mara kyau.

Ilimi & ilimi

A kowane mataki na ilimi, akwai tallafi daga duka DEBRA UK's EB Community Support Team da sauran ƙungiyoyi don tabbatar da yaranku sun sami kulawar da ta dace don buƙatun EB ɗin su.
Ya koyi
Masu dafa abinci a cikin kicin ɗin da ba su da haske suna shirya abinci sosai kuma suna tsara faranti a ƙarƙashin haske mai laushi na rataye fitilu.

Aiki & aiki

Koyi game da zaɓuɓɓukan aiki don mutanen da ke zaune tare da EB da masu kula da su. Nemo yadda ake kewaya kasuwar aiki kuma sami tallafin da kuke buƙata.
Ya koyi
Alamar da aka rubuta "GASKIYA" tana ƙawata bangon wani gini mai jan tubali.

Gaggawa & kulawa na gaggawa

Kasance cikin shiri don gaggawa tare da jagorarmu don majinyatan EB. Nemo mahimman bayanan gaggawa don kiyaye ku da waɗanda kuke ƙauna. A cikin gaggawar likita koyaushe kira 999 ko je wurin A&E mafi kusa.
Ya koyi
Silhouette na mutum zaune a gefen wani tsari, yana kallon shimfidar wuri a faɗuwar rana.

Lafiyar zuciya

Ƙarfafa jin daɗin zuciyar ku tare da shawarwari da shawarwari masu amfani. Nemo ƙungiyoyin agaji da ƙungiyoyi waɗanda za su iya ba da tallafin lafiyar hankali na EB.
Ya koyi
Hanyoyin titin jirgin ƙasa sun shimfiɗa zuwa nesa a ƙarƙashin wani ɓangaren sararin sama, tare da faɗuwar rana a sararin sama.

Ƙarshen rayuwa da tallafin baƙin ciki

Nemo mahimmin tallafi na baƙin ciki na EB na tunani kafin da bayan mutuwa, da albarkatu daga wasu ƙungiyoyi waɗanda zasu iya taimakawa.
Ya koyi
Mata biyu da wani yaro suna wasa tare a kan bargo mai ban sha'awa a wani wurin shakatawa da bishiyar ceri.

Iyalai & masu kulawa

Sami bayanan da goyan bayan da kuke buƙata a matsayin mai kula da wani mai EB. Koyi game da sarrafa yanayin da samun damar albarkatu masu amfani.
Ya koyi
Mutumin da ke rubuta bayanin kula kusa da tsararrun kayan aiki, gami da na'urar duba hawan jini na dijital da na'urar bugun jini.

Health

Gano sabbin fahimta da shawarwari kan Kiwon Lafiyar EB. Kasance da masaniya game da mafi kyawun ayyuka don kiyaye ingantacciyar lafiya da walwala.
Ya koyi
Wani gidan biki na DEBRA tare da farar bene mai tsayi yana zaune a kan wani lawn ciyawa a ƙarƙashin sararin sama mai shuɗi.

DEBRA Gidajen Hutu

Gano hutun biki mai araha mai araha da samun dama a wasu fitattun wuraren shakatawa na Biritaniya masu kyau da taurari biyar masu daraja.
Ya koyi
Ana saka maɓalli a cikin makullin ƙofa, yayin da ƙarin maɓallai biyu suna karkata daga maɓalli ɗaya. Ƙofar a ɗan buɗe take, tana bayyana koren bangon waje mara kyau.

Taimakon gidaje

Tallafin gidaje ga al'ummar EB. Koyi game da shirye-shirye da albarkatun da za su iya taimakawa wajen nemo amintattun hanyoyin samar da gidaje.
Ya koyi
Likita a cikin farar riga yana ba da tallafi, yana riƙe da hannun mara lafiya a hankali a kan wani teburi mai ɗorewa, tare da allo a gefensu.

Gudanar da kula da lafiya

Koyi yadda ake kewaya hadaddun sarrafa kulawar likita don EB, kuma gano sabis na isar da sayan magani na EB wanda zai iya taimaka muku. Samun shawarwari na ƙwararru, shawarwari da tallafi.
Ya koyi
Kalkuleta, alkalami, da buɗaɗɗen hula suna hutawa akan takardu tare da bayanan kuɗi da rubutun hannu.

Kasuwancin kuɗi

Rayuwa tare da EB na iya zama nauyin kuɗi, amma akwai shawara, fa'idodi, da tallafin kuɗi na EB da ke akwai don taimakawa rage farashin ku.
Ya koyi
Wata karamar yarinya tana wasa cikin farin ciki a tsakanin manyan kumfa sabulu yayin da mutane ke kewaye da ita yayin taron membobin DEBRA UK.

Taimakon tsara & abubuwan da suka faru

Gano fa'idodin tallafin takwarorinsu. Haɗa tare da wasu, raba gogewa, kuma ku more keɓancewar abubuwan ga membobin DEBRA.
Ya koyi
Kwararren likita yana yanke bandeji a hankali daga ƙafar mutum akan saman da aka lulluɓe shuɗi.

Jiyya & Gudanarwa

Nemo game da jiyya da zaɓuɓɓukan gudanarwa don EB. Bincika dabaru don taimakawa rage alamun bayyanar cututtuka da inganta lafiyar gaba ɗaya.
Ya koyi
Mutane biyu suna zaune a teburin suna tattaunawa game da aiki.

Samun damar kulawa da zamantakewa

Jagora kan kulawa da zamantakewa da ci gaba da kiwon lafiya, da tallafin da za ku iya samu a matsayin wanda ke da EB.
Ya koyi
Wani likita a cikin farar riga mai stethoscope a wuya yana riƙe da wayar hannu.

Ga kwararru

Haɓaka aikin ƙwararrun ku tare da wadatar albarkatun EB. Kasance da masaniya, samun fahimta, da kuma haɗa kai da wasu ƙwararru a cikin al'ummar EB.
Ya koyi
Mutum ya rubuta a kwamfutar tafi-da-gidanka a teburin, tare da wayar hannu da buɗaɗɗen littafin rubutu a iya isa.

Ƙarin albarkatu

Gano ƙarin bayani, gami da tuƙi tare da EB, tallafi ga waɗanda ba 'yan ƙasar Burtaniya ba, zama tare da EB lokacin da kuka wuce 60, da littattafai na al'ummar EB.
Ya koyi
Mutane hudu, ciki har da mutum ɗaya a keken guragu, suna hira a wurin tsayawa a ƙarshen mako na Membobin DEBRA tare da tuta game da Bullen Healthcare a bango.

Abokan hulɗar DEBRA

Bayani game da wasu ƙungiyoyin da muke aiki da su, don haka za mu iya ba wa al'ummar EB sabbin ayyuka da samfurori waɗanda ƙila ba za su sami damar yin amfani da su ba.
Ya koyi
Ƙafa biyu a kan dutse suna ba da labarin iyali: takalma na manya, takalma na yara, da kuma manya. Biyu na ƙananan takalman jarirai nestles tsakanin su.

Shirye-shiryen iyali

Karin bayani
Wata mata tana jinjirin jariri a hannunta.

ƙananan yara

Karin bayani
Samari biyar ne suka tsaya a gaban titin dogo, sanye da kaya na yau da kullun, kowannensu ya shiga cikin wayarsa.

Matasa manya

Karin bayani
Iyali mai mutane hudu ne suka tsallaka titi, wata mata rike da jariri da wani mutum suna tafiya a gefenta da wata yarinya.

adulthood

Karin bayani
Hanyoyin titin jirgin ƙasa sun shimfiɗa zuwa nesa a ƙarƙashin wani ɓangaren sararin sama, tare da faɗuwar rana a sararin sama.

End rayuwa

Karin bayani
Memba na DEBRA

Kun san...?

Kuna iya zama memba na DEBRA UK idan kuna zaune tare da EB ko tallafawa wani tare da EB: iyaye, masu kulawa, 'yan uwa, ƙwararrun kiwon lafiya da masu bincike. Memba yana da kyauta kuma yana ba ku damar samun tallafi mai amfani, damar shiga, da abubuwan da suka faru don haɗawa da wasu a cikin al'ummar EB.

Kasance memba
Logo na DEBRA UK. Tambarin ya ƙunshi gumakan malam buɗe ido shuɗi da sunan ƙungiyar. Ƙarƙashin, alamar rubutun yana karanta "The Butterfly Skin Charity.
powered by  Yarda da Kuki na GDPR
Bayanin Sirri

Wannan shafin yanar gizon yana amfani da kukis domin mu iya ba ku damar kwarewa mafi kyau. Ana adana bayanin kuki a cikin burauzarka kuma yana aiki da ayyuka kamar gane da ku idan kun dawo zuwa shafin yanar gizon mu da kuma taimaka wa tawagar mu fahimci wane ɓangaren shafin yanar gizon da kuka samu mafi ban sha'awa da amfani.