Mbali yobisika ya EB - nkhani ya Sarah
Sarah Kay amakhala ndi epidermolysis bullosa simplex (EBS), mtundu wofala kwambiri wa EB. Sarah akugawana nkhani yake yokhuza kukula komanso kuganiza za EB yake ngati mapazi a 'Kay', kuti alandire matenda ndikupeza DEBRA UK. Amatsindikanso zovuta za umoyo wamaganizo za kukhala ndi chilema chobisika.
"EB yanga siyingawonekere nthawi zonse, koma vuto lakuthupi komanso lamalingaliro ndilowona. Sindili ndekha mu izi; Abambo anga, mchimwene wanga ndi amalume onse ali ndi EBS nawonso. Zizindikiro zimasintha chaka chonse, nthawi zambiri zimawonjezereka pamene kutentha, zomwe zimapangitsa kuti zikhale zovuta kuti ena amvetsetse zovuta zomwe zimakhalapo nthawi zonse, zosayembekezereka za kukhala ndi EB.
Zoletsa zatsiku ndi tsiku za EB
Kukhala ndi EB kumakukakamizani kudzipereka tsiku lililonse zomwe ena samaziganizira. Zochita zosavuta monga kuyenda, zimafuna kukonzekera mosamala chifukwa zimakhala zowawa kwambiri. Nenani kuti ndikufuna kupita ku London tsikulo ndi banja langa, sindingathe kuyenda nthawi zonse pakati pa malo oyimitsa chubu, makamaka pa tsiku lofunda. Kuyenda tsiku limodzi kumandipangitsa kukhala nthawi yayitali panjinga ya olumala ndipo nsapato zina zimawonjezera matuza anga. Zimakhudza osati ine ndekha, komanso banja langa ndi anzanga, omwe ayenera kusintha mapulani awo kwa ine.
Ndinkayeneranso kuganizira za mtundu umenewu pokonzekera tchuthi monga kuuka kwa ukwati wanga. Tinkayenera kuganizira za nthawi imene tingayende, chifukwa sindingathe kupita m’miyezi yachilimwe chifukwa n’zosatheka kuyenda kutali ndi kutentha.
Kupweteka kosalekeza kumabweretsa malingaliro oipa. Monga mphunzitsi, sindingakwanitse kupanga matuza omwe amapangitsa kuyima kapena kuyenda kukhala kosatheka, zomwe zimawonjezera kupsinjika kwina. Matuza owopsa amatha kupanga ndipo ngati atayenda, amatha kufalikira, kuwuluka ndikupangitsa ming'alu yayikulu pamapazi anga yomwe imatenga nthawi yayitali kuchira. Muthanso kutha kuyenda mwanjira yoseketsa kuti muthane ndi izi, ndipo ndang'amba minyewa kuchokera pa izi.
Kulandira matenda
Kupyolera mu DEBRA UK, ndalumikizana ndi ena omwe ali ndi EB zomwe zimandipangitsa kuti ndisakhale wosungulumwa, ndipo ndapezeka ndi EB, yomwe yakhala yopatsa mphamvu komanso kusintha moyo.
DEBRA asanakhalepo, ndinalibe mawu ofotokozera vuto langa. Ndikukula, nthawi zonse ndimaganiza kuti, "Chavuta ndi chiyani ndi ine?", Ndimadziona kuti ndine wosakwanira, ndipo ndimaganiza kuti ndi ine ndekha. kuti ine sanali bwino kwambiri pakuyenda. Tsopano nditha kunena kuti "Ndili ndi EB" ndipo ndavomereza kuti sindingathe kuchita zinthu zina. Zandipatsa mphamvu yofotokoza za vuto langa komanso kukhala wodekha kwa ine ndekha.
Ndine wothokoza kuti EB yanga yangodzipatula kumapazi anga, koma ikukhumudwitsabe. Ziphuphu kumapazi anu sizimamveka ngati zoipa, koma tsopano ndazindikira matenda anga, ndikumva kuti ndingathe kudzimvera chisoni ndikunena kuti, "Sindingathe kuchita izi chifukwa cha vuto langa" ndipo anthu akuvomereza kwambiri.