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Taimakon EB da albarkatu

A cikin wannan sashe zaku sami bayanai da albarkatu don taimakawa wayar da kan jama'a game da EB da kuma tallafi ga al'ummar EB. Da fatan za a yi amfani da shafukan da ke ƙasa don ganin bayanin 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. Hakanan zaka iya tuntuɓar mu don kowace tambaya.
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
Gidan Holiday na Windermere a cikin gundumar tafkin yana da ƙirar katako mai ban sha'awa, faffadar bene, kuma yana kewaye da bishiyoyi da lambuna masu cike da tsire-tsire iri-iri a ƙarƙashin sararin sama mai hazo.

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. 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
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
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