Pitani ku nkhani

KUKHALA kusiyana kwa EB

Chikwangwani chokhala ndi wodwala wachichepere komanso wofufuza wodzipereka wokhala ndi maikulosikopu. Zopereka zanu zimakulolani kuti "Khalani kusiyana kwa EB." Perekani lero.

 

2023 chinali chaka chofunikira kwambiri kwa gulu la epidermolysis bullosa (EB). Pempho la 'A Life Free of Pain', lomwe ambiri mwa inu munalithandizira mokoma mtima ndipo linaphatikizapo Wachiwiri kwa Purezidenti wa DEBRA, Graeme Souness, kusambira English Channel, anabweretsa EB kwa anthu, ndipo anapereka ndalama zomwe zinkafunika kwambiri zomwe zinathandiza EB yoyamba. mankhwala repurposing chipatala mayesero kuti ntchito.

Pali zambiri zoti tichite, ngakhale…

EB ndi matenda osowa, omwe amachititsa kuti khungu liwonongeke komanso kung'ambika pang'ono, zomwe zimapangitsa kuti pakhale matuza opweteka kwambiri, mabala otseguka, ndi kuyabwa koopsa. Anthu omwe ali ndi EB amakhala ndi ululu wosalekeza, wofooketsa ndipo amafunikira thandizo lanu lero.

Mutha KUKHALA kusiyana kwa anthu okhala ndi EB

Cholinga cha pempho la 'BE kusiyana kwa EB' ndikukweza £5m. Ndi ndalama izi:

  • perekani upangiri wapadera waumoyo wamaganizidwe ndi zothandizira ku gulu la EB.
  • perekani ndalama zambiri zandalama ku gulu la EB, kuphatikiza ndalama zogulira zinthu zapadera kuti muchepetse zizindikiro za EB, ndi zopereka ndi/kapena kusaina ku chithandizo chandalama chomwe chilipo kuwonetsetsa kuti membala aliyense atha kupezeka pamisonkhano yawo yofunika yachipatala ya EB.
  • kupereka mwayi wapadziko lonse ku DEBRA EB Community Support Team, kuphatikizapo pulogalamu ya zochitika zachigawo za EB Connect.
  • fulumizitsani pulogalamu yathu yobwezeretsanso mankhwala pamene tikufuna kupeza chithandizo chamankhwala chamtundu uliwonse wa EB. 

Ndi chithandizo chanu, tidzapitirizabe kuyika ndalama mu mayesero achipatala omwe ndi ofunika kwambiri kuti atsimikizire kuti mtsogolomu pali mankhwala othandiza amtundu uliwonse wa EB.

Thandizo lanu litithandizanso kupereka ndondomeko yowonjezera ya chisamaliro cha anthu a EB ndi chithandizo chomwe chili chofunikira kwambiri kuti moyo ukhale wabwino kwa anthu omwe ali ndi EB lero.

Chonde perekani lero. Chochita chilichonse chimatitengera sitepe imodzi pafupi ndi dziko lomwe palibe amene amavutika ndi ululu wa EB.

PEREKA LERO