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.
Labarin Kateryna
A cikin 2022, ni da iyalina muna yaƙe-yaƙe guda biyu: daya a kasar mu ta Ukraine, Da kuma daya gaba epidermolysis bullosa (EB). Dukansu yaƙe-yaƙe ne ba mu nema ba, da kuma waɗanda ba mu taɓa son faɗa a ciki ba.
Muna fama da EB tun lokacin da aka haifi 'yata Sasha a 2020. Tana da Junctional EB (JEB) da kuma fatarta tana da rauni kamar fiffiken malam buɗe ido. Ƙarƙashin taɓawa ko gogayya na iya sa fatarta ta yi kumbura, yana barin buɗaɗɗen raunuka masu raɗaɗi.
Sa’ad da aka soma yaƙi a Ukraine, mun gudu tare da mahaifina da abokina da kuma ɗana Roman. Mun bar gidanmu, kasarmu, rayuwarmu. Na firgita, amma ba mu da wani zabi. Mun kasance a cikin bulo lokacin da DEBRA UK ta fara tuntube ni, wanda ya yi aiki tare da wasu ƙungiyoyi don kai mu Poland. Da muka isa, mun hadu da wani dangin EB wanda ya kai mu kuma ya bamu bandejin da muke matukar bukata don blisters na Sasha.
Kafin wannan mafarkin ya fara. Na haɗu da ƴan uwa iyayen EB akan kafofin watsa labarun. A nan ne zan sadu da Karen, wadda ta taimaka wajen canza rayuwarmu.
Bala'i, Karen ta rasa ɗanta Dylan ga JEB lokacin da ya kasance kawai watanni uku da kwana ɗaya - wannan shine nau'i mai tsanani na EB da Sasha ke da shi. Dylan ba ya cikin bakin ciki kuma baya tare da mu, amma haskensa ya taimaka mana wajen tsira.
Karen ya gabatar mana da mu DEBRA EB Community Support Manager, Rowena. Tana ɗaya daga cikin mafi girman kyaututtukan da iyalina suka taɓa samu – ita ce mai ceton rai. Rowena ya taimake mu a hanyoyi marasa iyaka. Ta yi fiye da taimakawa wajen magance matsalolin aiki, ta tanadar goyon bayan motsin rai da ta'aziyya. A koyaushe ina jin cewa ba shi yiwuwa a tsira tare da EB ba tare da tallafi da ta'aziyya ba - yana kama da oxygen. Ɗaya daga cikin mafi kyawun hanyoyin da Rowena ya taimaka mana shine yin aiki don samun mu Allowance Rayuwa ta nakasa (DLA) ga Sasha, kamar yadda na same shi mai wuyar fahimtar yadda ake yin wannan a cikin ƙasar waje.
Wannan ya taimake mu tallafin kudi Sasha daga siyan ta ƙwararrun tufafi masu laushi da takalma to tafiyar tafiya don kai mu ga alƙawuran likita marasa ƙarewa.
Ta hanyar DEBRA UK kuma an sanya mu ƙarƙashin kulawar Cibiyar Cututtukan Rare a Asibitin Yara na Birmingham. Sasha bai taba samun wannan matakin kulawa da gwaninta ba, kuma ni jin godiya sosai cewa tana hannun amintattu yanzu. Rowena koyaushe yana ɗayan ƙarshen wayar don amsa tambayoyina, kuma koyaushe za ta yi duk abin da za ta iya don taimaka mini da Sasha.
Kasar mahaifata ta wuce mil dubu, amma Ba na jin kadaici saboda muna da goyon baya daga DEBRA EB Community Support Team kuma ta hanyar DEBRA, muna da alaka da sauran EB iyalai saboda abubuwan da suka faru kamar karshen mako na Membobinsu na shekara. Mambobin ƙungiyar EB sun taimaka mini da iyalina sosai, ciki har da Anna, ɗiyarta, Jasmine, ita ma tana da EB, godiyar ta mun sami gidaje, wanda zan yi godiya ga har abada.
Fatana a nan gaba shi ne yakin da ake yi a kasara ya kare kuma ina fata yakin da mu da sauran iyalai da dama da muke yi da EB zai kawo karshe kuma mu yi nasara a dukkan bangarorin biyu.
EB yanayi ne mai ban tsoro, kumburi da buɗaɗɗen raunuka suna haifar da ciwo na tsawon rai da nakasa, amma Ina fata cewa tare da ci gaba da goyon baya, DEBRA UK za ta sami damar amintar magungunan ƙwayoyi waɗanda za su iya kawo canji na gaske ga rayuwar Sasha. da kuma rayuwar wasu yara da manya da yawa da ke fama da ciwon EB.