Za DEBRA UK - Wotsogolera wachifundo wa EB
ndife amene
Ndife bungwe lothandiza anthu ku UK lomwe limayang'anira anthu omwe akhudzidwa ndi epidermolysis bullosa (EB) . Timathandiza mamembala opitilira 4,000 ku UK konse, kuphatikiza anthu opitilira 2,000 omwe ali ndi EB. Chaka chilichonse, mamembala opitilira 700 amagwiritsa ntchito mautumiki athu othandizira. Tili pano kuti tithandize anthu omwe ali ndi EB yobadwa nayo, mabanja awo ndi osamalira, komanso akatswiri azaumoyo ndi ofufuza. Pamodzi ndi ntchito yathu yothandizira, timathandizira ndikuyendetsa kafukufuku wofunikira wazachipatala kuti tiwongolere miyoyo.
Timaperekanso chithandizo chamagulu kwa anthu omwe ali ndi EB, yotchedwa epidermolysis bullosa acquisita (EBA).
Bungwe lachifundo linakhazikitsidwa mu 1978 ndi Phyllis Hilton, yemwe mwana wake wamkazi Debra anali ndi EB, monga bungwe loyamba la EB lothandizira odwala.
DEBRA UK idakhazikitsa DEBRA International, yomwe tsopano imagwira ntchito yokha kuti ithandize kukhazikitsa ndikuthandizira netiweki yapadziko lonse ya mabungwe othandizira odwala a DEBRA oposa 50.
Mu 2025 tinagwiritsa ntchito £3.9 miliyoni pa ntchito zachifundo, izi zinaphatikizapo thandizo la anthu ammudzi la EB, kafukufuku wa EB , maphunziro aboma, chisamaliro chaumoyo cha EB , komanso kupuma kwa mamembala athu. Tinagwiritsanso ntchito pafupifupi £1 miliyoni kuti tithandize anthu ambiri ku UK kudziwa za EB komanso zomwe timachita ngati bungwe lothandiza anthu.
Ndi chidziwitso chochulukirapo tikuyembekeza kupeza chithandizo chochulukirapo chifukwa timafunikira anthu ambiri momwe tingathere kuti tiwonetsetse dziko lomwe palibe amene akuvutika ndi EB.
Tikuyamikira kwambiri kuti tili ndi mwayi wodalira thandizo la anzathu ndi odzipereka omwe amatithandiza kuyendetsa masitolo athu opereka chithandizo . Kuphatikiza pa ntchito zathu zina zopezera ndalama, amapereka ndalama zomwe zimatithandiza kupereka chithandizo cha EB mdera lathu lero ndikuchita kafukufuku wofunikira pa chithandizo chogwira mtima cha EB cha mitundu yonse ya EB ya mawa.
Zimene timachita
DEBRA UK ilipo kuti ipereke chisamaliro cha anthu ammudzi ndi chithandizo chothandizira kuti moyo ukhale wabwino kwa anthu omwe ali ndi mitundu yonse ya EB yobadwa ndi yopezedwa. Timaperekanso ndalama zothandizira kafukufuku wochita upainiya kuti tipeze chithandizo chamankhwala chamitundu yonse ya EB yotengera.
Kuchokera pakupeza majini oyambirira a EB mpaka kupereka ndalama zoyesa zoyamba zachipatala mu chithandizo cha majini ndi kubwezeretsanso mankhwala, tachita mbali yofunika kwambiri mu kafukufuku wa EB padziko lonse lapansi ndipo takhala ndi udindo wopititsa patsogolo matenda, chithandizo, ndi kayendetsedwe ka tsiku ndi tsiku kwa EB.
Ndife odzipereka kuwonetsetsa kuti munthu aliyense yemwe amakhala ndi EB ku UK, mabanja awo, ndi owasamalira akupeza chithandizo chofunikira komanso chokulirapo chomwe akufunikira.
Dziwani zambiri za momwe timapezera ndalama komanso momwe timagwiritsira ntchito ndalama.
Timathandizana ndi NHS kuti tipereke chithandizo chamankhwala cha EB chomwe chili chofunikira kwa anthu omwe ali ndi mitundu yonse ya EB.
Pali malo anayi osankhidwa a EB ochita bwino kwambiri ku UK ndi ntchito ya Scottish EB yomwe imapereka katswiri wa EB chithandizo chamankhwala ndi chithandizo, komanso malo ena a zipatala ndi zipatala zomwe cholinga chake ndi kupereka ntchito zambiri za EB.
Timakhazikitsa ndikulimbikitsa kukhazikitsidwa kwa njira zatsopano ndikupereka ndalama zothandizira kupititsa patsogolo ntchito zomwe NHS ili ndi ntchito yosamalira odwala EB. Izi zikuphatikiza zida zapadera monga anamwino a EB ndi akatswiri azakudya.
Timagwirizananso ndi mabungwe ena kuti tipereke uphungu ndi chithandizo cha thanzi la maganizo, kupereka ndalama zothandizira maphunziro a EB, ndikupanga malangizo abwino kwambiri kwa akatswiri azaumoyo kuti awathandize kumvetsetsa momwe angachiritsire odwala omwe ali ndi mitundu yonse ya EB.
Ulendo wathu wopita kuchipatala cha odwala-centric EB
Kuwonjezera pa kupeza zambiri zomwe zikudziwika tsopano zokhudza EB kudzera mu kafukufuku woyamba komanso kuyambitsa mayeso oyamba a EB , tatsogoleranso njira yowonetsetsa kuti anthu omwe ali ndi mitundu yonse ya EB ali ndi mwayi wopeza chithandizo chamankhwala chapadera cha EB komanso chithandizo cha anthu ammudzi.
Dziwani zambiri za zina mwa zinthu zofunika kwambiri paulendo wathu wopereka chithandizo chamankhwala cha EB komanso chithandizo cha anthu ammudzi chomwe chimayang'ana kwambiri odwala.
Gulu lathu lothandizira anthu ammudzi la EB limagwira ntchito ndi anthu ammudzi a EB, azaumoyo, ndi akatswiri ena kuti apititse patsogolo moyo wa anthu omwe ali ndi mitundu yonse ya EB.
Gululi limapereka chithandizo, kulengeza, chidziwitso, ndi chithandizo chothandiza pamlingo uliwonse wamoyo ndi EB.
Gulu la mamembala ndi lochita nawo ntchito limagwira ntchito limodzi ndi mamembala kuti liwonjezere mwayi wochita nawo ntchito komanso kutenga nawo mbali, kuonetsetsa kuti zosowa za mamembala athu zili pamtima pa malingaliro athu ndikuthandizira kutsogolera ntchito zomwe timapereka kwa anthu onse aku UK EB.
Ndondomeko yathu ya umembala ikuphatikizapo mwayi wopuma pang'ono kunyumba , ndalama zothandizira , ndi zochitika zapadera zomwe mamembala ochokera ku UK konse angakumane kuti agawane chidziwitso ndi zokumana nazo, kupanga maubwenzi ofunikira komanso mabwenzi, komanso kupeza upangiri wa akatswiri ndi chithandizo kuchokera ku Gulu lathu Lothandizira Anthu a EB.
DEBRA UK ndi kampani yayikulu kwambiri ku UK yopereka ndalama zofufuzira za EB , ndipo ili m'gulu la makampani 15 apamwamba ofufuza ochokera ku UK omwe amaika ndalama mu kafukufuku wapadziko lonse lapansi.
Chiyambireni kukhazikitsidwa ku 1978, tayika ndalama zoposa £24m ndipo takhala ndi udindo, kudzera mu ndalama zofufuza zaupainiya ndikugwira ntchito padziko lonse lapansi, kuti tipeze zambiri zomwe tsopano zikudziwika za EB.
Tsopano tili pa gawo la ulendo wathu wofufuza komwe tikufunika kufulumizitsa liwiro la kupeza mankhwala, kuti tipeze mankhwala othandiza a mtundu uliwonse wa EB. Tinayamba ulendowu mu 2023 poyambitsa mayeso athu oyamba a EB obwerezabwereza ndipo tikuyembekeza kuyambitsa mayeso ena azachipatala mu 2026 ndi kupitirira apo.
Mu 2024 tinayambitsa kafukufuku wa James Lind Alliance (JLA) wa EB kuti atithandize kuzindikira mafunso ofunikira kwambiri okhudza mitundu yonse ya EB. Izi zitithandiza kumvetsetsa kafukufuku wa EB womwe tiyenera kuika patsogolo mtsogolo.
Phunziro la EB JLA ndiloyamba kutumizidwa ndi bungwe lothandizira odwala matenda osowa ndipo lidzaphimba mitundu yonse ya EB yotengera. Ndilofala padziko lonse lapansi ndipo liphatikiza zolowa kuchokera kugulu lapadziko lonse la EB; anthu okhala ndi mitundu yonse ya EB, osamalira, ndi akatswiri azaumoyo omwe amagwira ntchito ndi omwe akhudzidwa ndi EB. Tikuyembekeza kuwona zotsatira mu 2025.
Dziwani zambiri za zina mwa zinthu zofunika kwambiri paulendo wathu wofufuza.
athu ntchito, masomphenya ndi makhalidwe
- Masomphenya athu: Dziko lomwe palibe amene akuvutika ndi epidermolysis bullosa (EB).
- Cholinga chathu: Kupereka chisamaliro chamoyo wonse, pofunafuna machiritso, kwa onse omwe akhudzidwa / omwe akhudzidwa ndi kukhala ndi EB.
