Nkhani za mamembala okhala ndi EB

Kumanani ndi mamembala athu omwe amagawana zomwe adakumana nazo pa moyo wawo kukhala ndi EB.

Tithandizani ife kudzera [imelo ndiotetezedwa] ngati mukufuna kugawana nkhani yanu.

Nkhani ya Hiba

Hiba amagawana momwe zimakhalira kukhala ndi Recessive Dystrophic EB ndi chithandizo chochokera kwa madokotala, banja lake ndi Gulu Lothandizira la Community la DEBRA, kusangalala kwake kusukulu ndi maloto ake ochiritsa EB. Werengani zambiri

Nkhani ya Fazeel

Dzina langa ndine Fazeel ndipo ndili ndi EB - vuto lomwe limapangitsa khungu langa kuphulika ndikung'ambika mosavuta. Ndikadzakula ndidzakhala dokotala ndikuchiritsa EB. Werengani zambiri

Nkhani ya Isla

Ndife banja labwinobwino. Ana athu, Isla ndi Emily, amapita kusukulu, amakhala ndi anzawo ndipo amakonda kusewera pa trampoline. Koma m'modzi mwa ana anu akakhala ndi EB, muyenera kutanthauziranso bwino. Werengani zambiri

Nkhani ya Ayaan

Mlungu uliwonse ana zikwizikwi akupita kusukulu; kwa Ayaan, ulendo waufupi uwu ndizosatheka. Werengani zambiri

Nkhani ya Gabrielius

Gabrielius ali ngati ana ena. Ndiwopatsa mphamvu komanso akumwetulira ndipo amakonda kusewera mpira. Koma khungu lake ndi lolimba ngati phiko la gulugufe. Werengani zambiri

Nkhani ya Maya

Ndine wodziyimira pawokha komanso woyimira EB. Ndimathera nthawi yanga ndikugwiritsa ntchito njira yanga yotsatsira komanso malo ochezera a pa Intaneti kuti ndifalitse chidziwitso ndi kuphunzitsa anthu pa EB. Werengani zambiri

Nkhani ya Freddie

Amayi a Freddie ndi abambo ake adalimbana ndi matenda ake komanso kuda nkhawa kuti apeza bwanji ndalama. Koma amakhala ndi chidaliro podziwa kuti amatha kuyimba foni ku DEBRA nthawi iliyonse yomwe akufuna thandizo. Werengani zambiri

Nkhani ya Henry

EB yakhaladi yondivutitsa maganizo komanso yakuthupi. Zinthu zimatha kuwoneka zakuda kwambiri nthawi zina, ndipo ndikhulupirireni ndikanena kuti ndikudziwa, koma kutha kuyankhula kungapangitse kusiyana kulikonse padziko lapansi. Werengani zambiri

Nkhani ya Heather

Zochita za tsiku ndi tsiku, monga kuyimirira, kuyenda, ngakhale kugwira cholembera, zimatha kupangitsa Heather matuza. Nthawi zina ululu umakhala wovuta kwambiri amakwawa pansi kuti achotse kupanikizika kumapazi ake. Werengani zambiri

Nkhani ya Tom

Mawu a Tom pa momwe akukhala ndi epidermolysis bullosa simplex. Werengani zambiri

Leslie Paine

Kukhala ndi Dystrophic EB ndi njira yosayerekezeka ya Leslie Paine. Werengani zambiri

Banja la Talbot

Karen ndi Simon Talbot amalankhula za kutaya mwana wawo Dylan ku Junctional EB wazaka 3 ndi tsiku la 1. Werengani zambiri

Latest

06. The Beacon Patient Pairing Scheme 4th September – 30th October 2024
Lembetsani ku maimelo a umembala wa DEBRA

Lowani kuti mulandire zosintha kuchokera ku DEBRA za umembala wanu.
Othandizira a DEBRA UK, Paul Glover ndi Martyn Rowley, akweza £ 115,000 kwa mabanja omwe akukhala ndi EB

Lachiwiri pa Seputembara 3, othandizira odzipereka a DEBRA UK Paul Glover ndi Martyn Rowley adalandiridwa ku ofesi yayikulu ya DEBRA UK kukondwerera kupambana kwawo kwakukulu kokweza £115,000 mu 2024 kuthandiza omwe akukhala ndi EB.
DEBRA UK Challenge 2024

Seputembala uno, chonde thandizirani Graeme Souness pazovuta zake za 'BE the difference for EB'.

Ambiri amawerenga

Pezani malo ogulitsa

Pezani sitolo yanu yapafupi ya DEBRA ndikuthandizira kulimbana ndi EB. Masitolo athu amagulitsa zovala zotsika mtengo komanso zapamwamba zomwe timakonda kale, mipando, zinthu zamagetsi, mabuku, zida zakunyumba ndi zina zambiri.
Kusonkhanitsa mipando

Perekani mipando yanu yosafunikira, zinthu zapanyumba ndi zamagetsi pogwiritsa ntchito ntchito yathu yaulere yotolera mipando. Pokhala ndi njira zotetezera, kupereka zinthu zanu sikungakhale kosavuta.
Zinthu zomwe sitigulitsa

Dziwani kuti ndi miyezo yaumoyo ndi chitetezo ndi zilembo zomwe tikufuna komanso zomwe sitingathe kugulitsa.
EB ndi chiyani?

Epidermolysis bullosa (EB) ndi matenda opweteka omwe amatuluka pakhungu popanda mankhwala. Dziwani za mitundu yosiyanasiyana ya EB, zomwe zimayambitsa, zizindikiro ndi mankhwala.
Graeme Souness akusambira English Channel kuti akweze £1.1m kuti athetse ululu wa EB

Graeme Souness, wosewera mpira wakale wapadziko lonse lapansi, manejala, komanso pundit, akusambira English Channel mwezi uno kuti akweze ndalama zokwana £1.1m kuti aletse kuwawa kwa epidermolysis bullosa (EB).
Lumikizanani nafe
Perekani zinthu

Perekani zinthu zanu zomwe munazikonda kale, kuphatikiza zovala, mipando ndi zida zapanyumba kuti zisatayidwe komanso kutithandiza kupeza ndalama zofunika kudzera m'masitolo athu. Dziwani zambiri za momwe mungaperekere zinthu lero.
Tizigwira nafe

DEBRA ikhoza kupitiriza ntchito yake yofunika ndi chithandizo ndi chilimbikitso cha anthu ammudzi komanso ndi khama la antchito ake ndi odzipereka.
Khalani membala

Ngati inu kapena wachibale mukukhala ndi EB, ndinu wosamalira kapena wina amene amagwira ntchito ndi anthu omwe akhudzidwa ndi EB, ndiye kuti mutha kukhala membala wa DEBRA. Dziwani momwe mungachitire.
Nkhani ya Isla

Ndife banja labwinobwino. Ana athu, Isla ndi Emily, amapita kusukulu, amakhala ndi anzawo ndipo amakonda kusewera pa trampoline. Koma m'modzi mwa ana anu akakhala ndi EB, muyenera kutanthauziranso bwino.

Tag mtambo

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