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Nkhani ya Kateryna
Mu 2022, ine ndi banja langa tinali kumenya nkhondo ziwiri: imodzi m'dziko lathu la Ukrainendipo mmodzi motsutsa epidermolysis bullosa (EB). Zonsezo zinali nkhondo zomwe sitinapemphe, ndi omwe sitinkafuna kumenyana nawo.
Takhala tikumenyana ndi EB kuyambira mwana wanga Sasha anabadwa mu 2020. Iye ali Junctional EB (JEB) ndi khungu lake ndi losalimba ngati mapiko agulugufe. Kukhudza pang'ono kapena kukangana kungapangitse khungu lake kuchita matuza, kusiya mabala otseguka opweteka kwambiri.
Pamene nkhondo inaulika koyamba ku Ukraine, tinathaŵa m’dzikolo pamodzi ndi atate, mnzanga ndi mwana wamwamuna, Roman. Tinasiya nyumba yathu, dziko lathu, moyo wathu. Ndinachita mantha, koma tinalibe chochitira. Tinali mu bunker pamene ndinakumana koyamba ndi DEBRA UK, amene anagwira ntchito limodzi ndi mabungwe ena kuti atifikitse ku Poland. Titafika, tinakumana ndi banja la EB lomwe linatitenga ndipo anatipatsa mabandeji omwe tinkafuna kwambiri matuza a Sasha.
Tsoka ilo lisanayambe, Ndinalumikizana ndi makolo anzanga a EB pama social network. Kumeneku n’kumene ndinakumana ndi Karen, amene anathandiza kusintha moyo wathu.
Zachisoni, Karen adataya mwana wake Dylan ku JEB pamene anali ndi miyezi itatu yokha ndi tsiku limodzi - izi ndizofanana ndi mawonekedwe a EB omwe Sasha ali nawo. Dylan salinso ndi ife, koma kuwala kwake kunatitsogolera ku chitetezo.
Karen anatidziwitsa ife DEBRA EB Community Support Manager, Rowena. Iye ndi imodzi mwa mphatso zazikulu kwambiri zomwe banja langa linalandirapo - iye ndi wopulumutsa moyo. Rowena watithandiza m’njira zosatha. Iye amachita zambiri kuposa kuthandiza kuthetsa mavuto enieni, amapereka thandizo lamalingaliro ndi chitonthozo. Ndakhala ndikumva kuti sizingatheke kukhala ndi moyo ndi EB popanda chithandizo ndi chitonthozo - zili ngati mpweya. Imodzi mwa njira zabwino kwambiri zimene Rowena anatithandizira inali kugwira ntchito kuti atipezere Baibulo Disability Living Allowance (DLA) kwa Sasha, popeza ndidawona kuti ndizovuta kwambiri kumvetsetsa momwe ndingachitire izi kudziko lachilendo.
Izi zatithandiza thandizo la ndalama Sasha pomugula iye katswiri zovala zofewa ndi nsapato ku ndalama zoyendera kutifikitsa ku zokumana nazo zachipatala zosatha.
Kupyolera mu DEBRA UK tinayikidwanso pansi pa chisamaliro cha Rare Diseases Center ku Birmingham Children's Hospital. Sasha sanalandirepo chisamaliro ndi ukadaulo uwu m'mbuyomu, ndipo ine Ndikumva othokoza kwambiri kuti ali m'manja otetezeka tsopano. Rowena nthawi zonse amakhala kumbali ina ya foni kuti ayankhe mafunso anga, ndipo adzachita zonse zomwe angathe kuti andithandize ine ndi Sasha.
Kwathu kuli kutali ndi mailosi chikwi, koma Sindikumva ndekha chifukwa tili ndi thandizo kuchokera kwa a DEBRA EB Community Support Team ndipo kudzera mu DEBRA, tatero kugwirizana ndi mabanja ena a EB kudzera zochitika ngati Mamembala awo a pachaka a Weekend. Mamembala a gulu la EB andithandiza ine ndi banja langa kwambiri, kuphatikiza Anna, yemwe mwana wake wamkazi, Jasmine, nayenso ali ndi EB, zikomo kwa iye tinapeza nyumba, zomwe ndidzamuthokoza kwamuyaya.
Chiyembekezo changa chamtsogolo ndikuti nkhondo yakudziko lakwathu idzatha ndipo ndikuyembekeza kuti nkhondo yomwe ife, ndi mabanja ena ambiri, tikulimbana ndi EB idzathanso ndipo tidzapambana mbali zonse ziwiri.
EB ndi vuto lowopsa, matuza ndi mabala otseguka amayambitsa kupweteka kwa moyo wonse ndi kulemala, koma Ndikukhulupirira kuti ndi chithandizo chopitilira, DEBRA UK azitha kupeza chithandizo chamankhwala chomwe chingasinthe moyo wa Sasha. ndi ku miyoyo ya ana ena ambiri ndi akuluakulu omwe akukhala ndi ululu wa EB.
