Mbiri yathu
Mbiri yakale ya DEBRA
The mbiri ya DEBRA kuyambira 1963 pamene Phyllis Hilton anali ndi mwana wamkazi wotchedwa Debra yemwe anabadwa naye matenda a dystrophic EB. Pamene Debra Hilton anabadwa zochepa kwambiri zinali zodziwika za EB, ndipo Phyllis anauzidwa ndi asing'anga panthawiyo kuti palibe chimene angachite kuti athetse Debra ndipo zomwe akanatha kuchita ndikupita naye kunyumba ndi kumusamalira mpaka pamene anamwalira. Phyllis ananyalanyaza uphungu umenewu ndipo m’malo mwake anafunafuna njira zochizira khungu la Debra pogwiritsa ntchito zovala za thonje.
Zaka zambiri pambuyo pake mu 1978 pamene Debra anali ndi zaka 15, Phyllis anakumana ndi mayi yemwe ankafuna chithandizo ndi uphungu atabadwa kwa mwana wake yemwenso anali ndi EB. Phyllis anadabwa ndi kumva chisoni kuti palibe chimene chinaoneka kuti chasintha m’kupita kwa zaka, ndipo analingalira kuti palibe chimene chingasinthe ngati iye ndi makolo ena atachitapo kanthu.
Kuyambira pamenepo Phyllis anayamba kulembera magazini, mawailesi, anthu otchuka, ndi zipatala kukonza msonkhano wa makolo a ana omwe ali ndi EB. Anthu 78 anapezeka pa msonkhano woyamba, umene unachitikira ku Manchester, ndipo unali msonkhano umene unachititsa kuti bungwe lachifundo likhazikitsidwe mwalamulo monga gulu loyamba la odwala EB padziko lonse lapansi, kutenga dzina lake kuchokera kwa mwana wamkazi wa Phyllis. Dzina la DEBRA lidapangidwanso ngati chidule cha Dystrophic Epidermolysis Bullosa Research Association (DEBRA).
Zachisoni, pa 21 Novembara 1978, Debra Hilton adamwalira, koma uku sikunali kutha kwa DEBRA koma chiyambi. Pazaka 40+ kuyambira pamenepo, DEBRA yakula kwambiri mabungwe alongo omwe ali m'maiko 40, pulogalamu yapadziko lonse yofufuza, ndi ntchito zamphamvu zachipatala ndi unamwino. Pamene Phyllis adayambitsa zachifundo, mwana wake wamkazi anali ndi nsanza za thonje zokha kuti ateteze khungu lake komanso akatswiri azachipatala osadziwa zambiri ankaganiza kuti matendawa ndi opatsirana komanso kuti panalibe zochepa zomwe zingatheke kuti athetse ululu wosalekeza womwe umayambitsa. Masiku ano, odwala onse a ku UK ali ndi mwayi wovala zovala zapamwamba, kuzindikira mtundu wamtundu wa EB ndi chizolowezi ndipo mayesero ofufuza zachipatala akuchitika padziko lonse lapansi.
Pali zambiri zomwe ziyenera kuchitidwa kuti mupeze chithandizo chamankhwala chamtundu uliwonse wa EB koma chifukwa cha Phyllis Hilton, yemwe anamwalira ali ndi zaka 81 mu October 2009, ndi thandizo lalikulu lomwe adapereka ku gulu la EB, kukumbukira kwake kukupitirizabe.
M'malo mwa gulu lonse la EB padziko lonse lapansi, zikomo Phyllis pa chilichonse chomwe mudachitira anthu okhala ndi mitundu yonse ya EB.
Ulendo wathu wopeza mankhwala othandiza komanso machiritso
DEBRA ndiye wopereka ndalama zambiri ku UK Kafukufuku wa EB, ndi opereka ndalama 15 apamwamba aku UK ofufuza pa matenda onse ndi mikhalidwe yoyika ndalama pakufufuza padziko lonse lapansi. Tayika ndalama zoposa £22m ndipo takhala ndi udindo, kudzera mukupereka ndalama zofufuza ndikugwira ntchito padziko lonse lapansi, kuti tikhazikitse zambiri zomwe zikudziwika za EB. Ino ndi nthawi yofulumizitsa kufulumira kwa kutulukira, kupeza mankhwala atsopano, ndipo pamapeto pake kuchiza (ma) EB.