Njira yathu yofufuzira
Ndife amodzi mwa omwe akutsogolera padziko lonse lapansi popereka ndalama zofufuzira za epidermolysis bullosa (EB) , ndipo timayika ndalama zokwana £500,000 pachaka kuyambira mu 1978.
Kudzipereka kwa nthawi yayitali kumeneku kwathandiza kusintha kumvetsetsa kwapadziko lonse kwa EB ndipo kwakhazikitsa maziko a chithandizochi komanso kuchiritsa zomwe anthu ammudzi wa EB akufunikira mwachangu.
Njira yathu yofufuzira imayang'ana kwambiri pa zotsatira zake: yopangidwa ndi zomwe anthu omwe ali ndi EB amaika patsogolo ndipo imayendetsedwa ndi umboni wochokera ku maphunziro athu atatu: Maphunziro athu | DEBRA UK.
Cholinga chathu ndi cholimba mtima komanso chosasinthasintha: kufulumizitsa chithandizo chomwe chimachepetsa mphamvu ya tsiku ndi tsiku ya mtundu uliwonse wa EB - ndikuyendetsa machiritso omwe adzathetsa vutoli.
Tikuchirikiza kafukufuku womasulira wapamwamba kwambiri padziko lonse lapansi wokhala ndi kuthekera kwakukulu kosintha miyoyo tsopano, ndikuyika zotsatira za odwala pamtima pa chisankho chilichonse chothandizira ndalama.
Kuti tiwonjezere cholinga chimenecho, mu Marichi 2026 tinasonkhanitsa ndikutsogolera gulu loyamba la Global EB Taskforce ku Hever Castle ku Kent, UK. Izi zinasonyeza kupita patsogolo kwakukulu pa ntchito yapadziko lonse yosintha chisamaliro cha EB ndi kafukufuku, kugwirizanitsa atsogoleri mu sayansi, mankhwala, mafakitale, malamulo ndi kuchirikiza odwala kumbuyo kwa njira yomveka bwino ya zaka khumi zikubwerazi.
Mapu a njira yogwirira ntchito amangidwa pa kuphatikiza ndi kufulumira: kulumikiza sayansi yopezera zinthu zatsopano ndi chitukuko chachangu cha njira zatsopano zochiritsira komanso kuyang'ana kwambiri zomwe anthu omwe ali ndi EB amafunikira kwambiri - kupweteka pang'ono ndi kuyabwa, magwiridwe antchito abwino, moyo wabwino komanso kuwongolera matenda kosatha.
Zotsatira za gulu la Global EB Taskforce zidzapanga gawo lotsatira la njira yathu yofufuzira. Kupatula lipoti, ndi udindo wochitapo kanthu - kupempha ofufuza, asing'anga, makampani, opanga mfundo, opereka ndalama, olimbikitsa odwala ndi gulu la EB padziko lonse lapansi kuti achitepo kanthu mwachangu, agwire ntchito limodzi ndikukwaniritsa cholinga chimodzi chofanana: kuthetsa vuto la EB ndikubweretsa chithandizo chogwira mtima - komanso machiritso - omwe aliyense wokhudzidwayo angapezeke.
Zofunika kwambiri pa kafukufuku wathu
Zofunikira zathu zinayi zofufuza zikuyang'ana pa cholinga chimodzi: kufulumizitsa kupita patsogolo komwe kumabweretsa zotsatira zenizeni komanso zoyezeka kwa anthu omwe ali ndi mitundu yonse ya EB. Izi ndi:
- Kwezani mmwamba kukonzanso mankhwala ndi mapulogalamu opeza mankhwala kuti athandize kupititsa patsogolo chithandizo chogwira mtima cha mitundu yonse ya EB.
- Wonjezerani ndalama mu kafukufuku wokhudza odwala womwe ungathandize kuthana ndi zizindikiro ndi zotsatira zomwe ndizofunikira kwambiri.
- Tsegulani chidziwitso chozama cha ululu wa EB, kuyabwa, kutupa ndi kufalikira kwa matendawa kuti mutsegule njira zatsopano zochizira.
- Pangani ndikuthandizira mbadwo wotsatira wa ofufuza a EB kuti apititse patsogolo ntchitoyi.
Tikupempha asayansi, opereka ndalama ndi ogwira nawo ntchito m'makampani kuti agwirizane nafe pakufulumizitsa kafukufuku wa EB, kusintha luso kukhala mankhwala ndikusintha tsogolo la munthu aliyense wokhudzidwa ndi mtundu uliwonse wa EB.
Mafomu ofunsira ndi olandiridwa kuchokera kumadera onse okhala ndi cholinga, ukatswiri komanso changu chofuna kukonza miyoyo ya anthu omwe ali ndi EB.
Ndi mitundu yanji ya kafukufuku yomwe DEBRA imathandizira?
Kuti tisankhe mapulojekiti ofufuza omwe DEBRA UK iyenera kuwapatsa ndalama, tili ndi madera anayi omwe tikuganiza kuti angathandize kwambiri mabanja omwe ali ndi EB.
Werengani za mapulojekiti ofufuza a EB omwe tikupereka ndalama pakadali pano.
Mankhwala omwe awonetsedwa kale kuti ndi otetezeka komanso kuchepetsa zizindikiro za mikhalidwe ina akhoza kuyesedwa pa zizindikiro za EB.
Kafukufuku wokhudza EB, eczema, psoriasis, khansa yapakhungu kapena matenda ena apakhungu angathandize kupeza chithandizo chochepetsera, kuyimitsa ndi/kapena kusintha zizindikiro za EB.
Matupi athu amapangidwa ndi mapuloteni ambiri osiyanasiyana omwe amagwira ntchito limodzi. Malingana ndi puloteni yomwe imasweka, komanso momwe imasweka, timapeza mtundu wina wa EB ndi zizindikiro zosiyana.
- Zizindikiro zapakhungu zimaphatikizapo matuza opweteka omwe amatha kusokoneza kuyenda / kuyenda ndikuyambitsa matenda, zipsera, kukhuthala kwa khungu ndi misomali, kuphatikiza zala zala / zala ndi tsitsi.
- Mwayi wokhala ndi khansa yapakhungu (Squamous Cell Carcinoma, SCC) imachulukitsidwa kwa anthu ena omwe ali ndi Dystrophic EB.
- Pamwamba pa maso amatha kukhudzidwa ndikupangitsa maso kukhala owawa/owuma komanso osawona.
- Mzere wa mkamwa, mmero ndi mphuno ukhoza kukhudzidwa ndi matuza omwe amachititsa kuvutika kutafuna, kumeza ndi kuyankhula zomwe zingayambitse kuperewera kwa zakudya m'thupi, kuchepa kwa magazi m'thupi, kuchedwa kukula komanso kupuma.
- Mano enamel sangapangidwe monga momwe amayembekezera ndipo zingakhale zovuta kuyeretsa mano bwino chifukwa cha ululu wa matuza mkati mwa mkamwa.
- Ululu ndi kuyabwa ndi zizindikiro zazikulu.
Kufufuza zomwe zimayambitsa EB ndi zomwe zimapangitsa kuti zikhale zovuta kapena bwino pakapita nthawi.
Kumvetsetsa zomwe zimayambitsa zizindikiro za EB ponena za maselo ndi mapuloteni zidzathandiza ofufuza amtsogolo kuti azisankha bwino mankhwala ndi mankhwala atsopano.
Timafunikira ofufuza abwino kwambiri kuti adziwe za EB ndikukhala ndi mwayi wochita kafukufuku womwe ungatithandize kulimbana ndi EB.