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Za DEBRA UK - Wotsogolera wachifundo wa EB
ndife amene
Ndife a UK EB achifundo; bungwe lothandizira kafukufuku wamankhwala padziko lonse ndi bungwe lothandizira odwala kwa aliyense ku UK yemwe ali ndi mtundu wa EB, achibale awo, osamalira, kuphatikizapo akatswiri azaumoyo ndi ofufuza omwe ali ndi luso epidermolysis bullosa (EB).
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 idapitilira kukhazikitsa DEBRA International, yomwe tsopano ikuyenda payokha kuti ithandizire kukhazikitsa ndikuthandizira maukonde apadziko lonse lapansi opitilira 50. Mabungwe othandizira odwala DEBRA.
Ku UK ndife bungwe lothandizira odwala EB lomwe lili ndi mamembala pafupifupi 4,000. Chaka chilichonse, mamembala athu opitilira 600 amalandila chithandizo kudzera mu athu EB Community Support Team.
Mu 2023 tidayika ndalama pafupifupi $ 3.5m Kafukufuku wa EB, EB chisamaliro ndi chithandizo cha anthu, ndi EB katswiri wazachipatala. Tidawononganso ndalama zokwana £1m kuti tithandizire kuonetsetsa kuti anthu ambiri ku UK akudziwa za EB komanso zomwe timachita ngati chithandizo.
Ndi chidziwitso chochulukirapo tikuyembekeza kupeza chithandizo chochulukirapo chifukwa timafunikira anthu ambiri momwe tingathere kuti tiwonetsetse dziko lomwe palibe amene akuvutika ndi EB.
Ndife okondwa kwambiri kudalira thandizo la anzathu ndi odzipereka omwe amatithandiza kuyendetsa network yathu yamashopu achifundo. Pamodzi ndi ntchito zathu zina zopezera ndalama, amapereka ndalama zomwe zimatithandiza kupereka chisamaliro cha EB ndi chithandizo chamasiku ano ndikuchita kafukufuku wofunikira pamankhwala ogwira mtima a EB amitundu yonse ya EB 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 timachitira kwezani ndi amathera 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.
Timagwiranso ntchito ndi mabungwe ena kuti tipereke upangiri ndi chithandizo chaumoyo wamaganizidwe, kupereka ndalama zophunzitsira za EB, ndikukula malangizo abwino kwambiri kwa akatswiri azaumoyo kuwathandiza kumvetsetsa momwe angachitire odwala omwe ali ndi mitundu yonse ya EB.
Ulendo wathu wopita kuchipatala cha odwala-centric EB
Kukhazikitsanso zambiri zomwe zimadziwika tsopano za EB kudzera muupainiya wofufuza komanso kutumiza EB yoyamba kukonzanso mankhwala kuyesedwa kwachipatala, tatsogoleranso njira yowonetsetsa kuti anthu omwe ali ndi mitundu yonse ya EB ali ndi mwayi wopeza katswiri wotsogola padziko lonse wa EB chisamaliro chaumoyo ndi ntchito zothandizira anthu ammudzi.
Dziwani zambiri za zina mwazo zofunika kwambiri paulendo wathu kupereka chithandizo chamankhwala cha EB cha odwala komanso chithandizo chamagulu.
athu EB Community Support Team amagwira ntchito ndi gulu la EB, chisamaliro chaumoyo, ndi akatswiri ena kuti apititse patsogolo moyo wa anthu okhala ndi mitundu yonse ya EB.
Gululi limapereka chithandizo, kulengeza, chidziwitso, ndi chithandizo chothandiza pamlingo uliwonse wamoyo ndi EB.
The umembala ndi chinkhoswe timu amagwira ntchito limodzi ndi mamembala kuti awonjezere mwayi wotenga nawo mbali, kuwonetsetsa kuti zosowa za mamembala athu zili pamtima pamalingaliro athu ndikuthandizira kutsogolera ntchito zomwe timapereka kwa gulu lonse la UK EB.
Ndondomeko yathu ya umembala imaphatikizapo mwayi wa zochepetsera zopumira kunyumba za tchuthi, zopereka, ndipo adalankhula zochitika kumene mamembala ochokera ku UK akhoza kubwera pamodzi kuti agawane zomwe akudziwa, kupanga maubwenzi ofunikira ndi mabwenzi, ndi kupeza upangiri waukatswiri ndi chithandizo kuchokera ku Gulu lathu la EB Community Support Team.
DEBRA UK 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.
Chiyambireni kukhazikitsidwa ku 1978, tayika ndalama zoposa £22m ndipo takhala ndi udindo, kudzera mu ndalama zofufuza zaupainiya ndikugwira ntchito padziko lonse lapansi, kuti tipeze zambiri zomwe tsopano zikudziwika za EB.
Tsopano tili pamlingo waulendo wathu wofufuza komwe tikufunika kufulumizitsa zomwe tapeza, kuti tipeze chithandizo chamankhwala chamtundu uliwonse wa EB. Tinayamba ulendowu mu 2023 potumiza wathu woyamba EB mankhwala repurposing chipatala mayesero ndipo ndikuyembekeza kuyitanitsa mayeso ena azachipatala mu 2025 ndi kupitilira apo.
Mu 2024 tinapanga a James Lind Alliance (JLA) kuphunzira kwa EB kuti atithandize kuzindikira mafunso ofunika kwambiri osayankhidwa okhudza mitundu yonse ya EB. Izi zitithandiza kumvetsetsa zomwe kafukufuku wa EB tiyenera kuziyika patsogolo m'tsogolomu.
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 mwazo 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.
