Kusamalira mabala, kusamalira ululu, ndi kupewa kuvulala kwatsopano ndi njira yathu yamoyo

Moni ndine Kai, ndili ndi zaka 20 ndipo ndimakhala naye epidermolysis bullosa simplex, kapena EBS. EBS ndiyo yofala kwambiri ndipo ikhoza kukhala mtundu wocheperako wa EB, komabe zikadali ndi chiyambukiro chachikulu pa moyo wanga, kuphatikizapo kusewera masewera, ndi chilakolako changa: mpira.

Mayi anga anayamba kuona matuza kumapazi anga ndili ndi miyezi inayi tili patchuthi. Chaka chilichonse m’miyezi yachilimwe. m’manja ndi m’mapazi matuza ankangotulukabe, ndipo mabala a m’mawondo anga anatenga nthawi yaitali kuti achire. Pa miyezi ya 18, amayi anga adakambirana ndi GP za mabala omwe amawonekera pa mawondo anga chifukwa cha nthawi yomwe adatenga kuti achiritse komanso chisamaliro ndi chisamaliro chomwe anafunikira kuti apewe matenda. Izi zinayambitsa njira yayitali kuti apeze matenda a EB. Maulendo ambiri mmbuyo ndi mtsogolo kwa madokotala ndipo potsirizira pake ananditumiza ku chipatala cha New Cross kwa dokotala wa dermatologist. Anali mlangizi amene adazindikira kuti akhoza kukhala EB ndipo adanditumiza ku Chipatala cha Ana cha Birmingham. Ndinali atatu panthawiyi.

Pa nthawi yanga yoyamba adalankhula ndi amayi anga za EB ndi zomwe zinali. Iye akuvomereza tsopano kuti anakhumudwa kwambiri ndipo sindimamvetsetsa EB mpaka patapita nthawi m'moyo wanga komanso maola otsatira a kafukufuku wake. Mu 2006 nditapezeka ndi matenda komanso chifukwa cha msinkhu wanga, adatenga magazi kuchokera kwa amayi anga kuti akayese chibadwa. Zinatenga chaka kuti apeze zotsatira atazitumiza ku labu ku Scotland. Izi zidatsimikizira kupezeka kwa EBS komanso kusintha kwamtundu wina wa keratin wanga. Mu 2019, ndinali ndi magazi anga omwe adatumizidwa kukayezetsa majini kuti atsimikizire kuti ndili ndi matenda (zinthu zachitika kwambiri kuyambira 2006, popeza nthawi ino zotsatira zanga zidangotenga milungu iwiri).

ndili ndi abale awiri; m'modzi wokhala wopanda EB ndi yemwe ali ndi EBS. Ndikudziwanso kuti pali mwayi wa 50% woti ndidutse kusintha kwa jini ngati ndili ndi ana.

EB yandipangitsa kuti zikhale zovuta kuti ndizitha kupikisana pamasewera pazaka zambiri pamene makamaka ndimakhala ndi matuza anga pamapazi anga, chifukwa cha izi ndimavutika kuthamanga, ngakhale kuyenda, monga momwe matuza amawapangitsa kukhala ovuta kwambiri. Kuti ndizitha kupikisana nawo pamasewera ndiyenera kutsatira malamulo okhwima osamala ndikumanga bandeji ndikumanga mapazi anga ndisanapikisane nawo mumasewera a mpira kuti andithandizire kusachita bwino pamasewera. Masewera atatha, ndimaviika mapazi anga mumitundu iwiri ya zonona ndikugwetsa matuza asanawaveke kuti athandize kuchira.

Ndi machesi kumapeto kwa sabata ndi maphunziro apakati pa sabata, nthawi zambiri ndimasewera ndi matuza angapo pa phazi lililonse chifukwa cha nthawi komanso khungu lopanda nthawi kuti lichiritse ndikukulanso. Kuwongolera zowawa ndikupewa zovuta zilizonse kumapangitsa EB kukhala yovuta tsiku lililonse ndipo imatha kukhudza moyo wanga watsiku ndi tsiku. kutanthauza kuti m’mbuyomu ndaphonyapo kucheza ndi anzanga komanso achibale.

Ndakhala ndikudziŵa bwino za EB yanga kuyambira ndili wamng'ono koma sindinalankhulepo za izo kwa anzanga. Monga mwana, makamaka wachinyamata, simukufuna kukhala wosiyana, Komabe masukulu, aphunzitsi a mpira ndi abwenzi akhala akuthandiza kwambiri. Banja langa lakhala mamembala a DEBRA kuyambira 2015 ndipo pamene ndikukalamba, DEBRA yatenga gawo lofunikira popereka zidziwitso kuti ndigawane ndi anthu. Izi zawathandiza kuti azindikire osati zomwe EB ili, komanso momwe angandithandizire. Zandipatsa chidaliro chodziwitsa anthu za EB yanga.

DEBRA adathandiziranso banja kuti titha kukhala ndi nthawi yabwino limodzi ndipo takhala tikuchita nyumba zawo ziwiri zatchuthi ku Weymouth ndi Poole. Matchuthi amenewa sikuti amangotithandiza kukhala ndi nthawi monga banja pamtengo wochepa, koma malo ogona amakhala okonzeka bwino kwa mabanja omwe amakhala ndi EB. Zoyenera kwa ine ndi mchimwene wanga wazaka 5 yemwenso ali ndi EBS.

EB akadali chinthu chomwe anthu ambiri sadziwa. Monga momwe anthu omwe ali ndi EB amadziwira, pakadali pano palibe mankhwala (Ndine wokondwa kwambiri ndi kuyesa kwatsopano kwamankhwala komwe kukubwera) kotero kusamalira zilonda, kusamalira ululu, ndi kupewa kuvulala kwatsopano ndi njira yathu ya moyo. Ndikufuna kudziwitsa anthu za EB ndi ntchito zabwino zomwe bungwe la DEBRA limachita.

DEBRA aganiza mokoma mtima kuti andithandize pa mwayi wanga watsopano ku Newport Town Football Club umene uli ulemu kwa ine kuwayimilira ndikusewera mpira.

Mwachiyembekezo, ndidzatha kudziwitsa zambiri za EB ndi chithandizo kwa iwo, kuti tsiku lina apeze mankhwala ndi machiritso omwe gulu la EB likufunikira kwambiri.