Tarihinmu

Tarihin DEBRA

The Tarihin DEBRA kwanan wata daga 1963 lokacin da Phyllis Hilton ta haifi 'ya mai suna Debra wacce aka haifa tare da ita dystropic EB. Lokacin da aka haifi Debra Hilton ba a san shi sosai game da EB ba, kuma Phyllis sun gaya wa likitoci a lokacin cewa babu wani abin da za su iya yi don jinyar Debra kuma duk abin da za ta iya yi shi ne kai ta gida ta kula da ita har ta mutu. Phyllis ya yi watsi da wannan shawarar kuma a maimakon haka ya nemi hanyoyin da za a bi da fata Debra ta amfani da suturar auduga.

Shekaru da yawa daga baya a cikin 1978 lokacin da Debra ta kasance 15, Phyllis ta tuntube ta da wata mata da ke son taimako da shawara bayan haihuwar jaririnta wanda kuma yana da EB. Phyllis ta yi mamaki kuma ta yi baƙin ciki cewa babu abin da ya bayyana a cikin shekaru da yawa, kuma ta ji cewa babu abin da zai canza sai ita da sauran iyayenta sun yi aiki.

Tun daga wannan lokacin Phyllis ta fara rubutawa ga mujallu, gidajen rediyo, mashahurai, da asibitoci don shirya taro ga iyayen yara masu EB. Mutane 78 ne suka halarci taron na farko, wanda aka gudanar a Manchester, kuma wannan taro ne ya kai ga kafa kungiyar agaji a hukumance a matsayin kungiyar masu tallafawa marasa lafiya ta EB ta farko a duniya, inda ta karbo sunanta daga ‘yar Phyllis. An kuma yi nufin sunan DEBRA a matsayin taƙaitaccen Ƙungiyar Bincike na Epidermolysis Bullosa (DEBRA).

Abin baƙin ciki, a ranar 21 ga Nuwamba 1978, Debra Hilton ya mutu, amma wannan ba ƙarshen DEBRA ba ne amma farkon farawa. A cikin shekaru 40+ tun lokacin, DEBRA ta girma cikin iyaka tare da Kungiyoyin 'yan uwa dake cikin kasashe 40, shirin bincike na duniya, da sabis na asibiti mai ƙarfi da aikin jinya. Lokacin da Phyllis ta kafa wannan sadaka, ɗiyarta kawai tana da tsumman auduga don kare fatarta kuma ƙwararrun likitocin marasa lafiya sukan yi tunanin cewa yanayin yana yaduwa kuma babu ɗan abin da za a iya yi don rage radadin ci gaba da yanayin ke haifarwa. A yau, duk marasa lafiya na Birtaniya suna samun damar yin amfani da kayan ado na zamani, ganewar asali na takamaiman nau'in kwayoyin halitta na EB na yau da kullum kuma gwaje-gwajen bincike na likita suna faruwa a fadin duniya.

Har yanzu akwai abubuwa da yawa da ya kamata a yi don samun ingantattun magunguna ga kowane nau'in EB amma saboda Phyllis Hilton, wacce ta rasu tana da shekaru 81 a watan Oktoban 2009, da kuma babbar gudunmawar da ta bayar ga al'ummar EB, ƙwaƙwalwarta tana ci gaba da wanzuwa.  

A madadin daukacin al'ummar EB na duniya, na gode Phyllis saboda duk abin da kuka yi ga mutanen da ke zaune tare da kowane nau'in EB. 

Tafiyarmu don nemo ingantattun jiyya da magani(s)

DEBRA ita ce mafi girman mai ba da kuɗi na Burtaniya Binciken EB, kuma a cikin manyan masu ba da tallafin bincike na tushen 15 na Burtaniya a duk cututtukan da yanayin da ke saka hannun jari a cikin bincike na duniya. Mun kashe sama da £22m kuma mun kasance da alhakin, ta hanyar ba da gudummawar bincike na majagaba da yin aiki a duniya, don kafa yawancin abin da aka sani game da EB. Yanzu ne lokacin da za a hanzarta saurin ganowa, don nemo sabbin jiyya, da kuma warkarwa (s) ga EB.

Kara karantawa game da wasu muhimman cibiyoyi a tafiyarmu