Zothandizira azachipatala

Tsambali lili ndi zothandizira akatswiri azachipatala omwe akuchiza ndikuwongolera chisamaliro cha odwala EB. Chonde pitani ku Chigawo cha chidziwitso pazithandizo zokhudzana ndi anthu omwe siachipatala.

mabuku

Kuphatikiza pa DEBRA International Malangizo Othandizira Odwala, pali zowonjezera zowonjezera zomwe zimapezeka kwa akatswiri oyang'anira chisamaliro cha odwala EB.

Njira Zothandizira
Malangizo Ophatikizana Pamanja ndi Zochita Zolimbitsa Thupi za Ana omwe ali ndi epidermolysis bullosa (© Birmingham Children's Hospital NHS Trust, ikupezeka pano mwa chilolezo cha gulu la Birmingham Children's Hospital Occupational Therapy)

Birmingham Women's & Children's NHS Foundation Trust yapanganso zosiyanasiyana timapepala ndi mavidiyo ophunzitsa kwa akatswiri.

Momwe mungatumizire anthu ku Gulu Lothandizira Anthu

Gulu lathu lothandizira anthu ammudzi limagwira ntchito limodzi ndi akatswiri azachipatala komanso azaumoyo. Kuti mudziwe zambiri za kalozerayu, chonde werengani mfundo zotumizira anthu.

chonde onani ndondomeko zathu tsamba kuti mudziwe zaposachedwa.

EB-CLINET

EB-CLINET ndi njira yopititsira patsogolo chithandizo chamankhwala kwa anthu omwe ali ndi EB polimbikitsa mgwirizano pakati pa akatswiri azaumoyo omwe amagwira ntchito ndi EB.

Thanzi la Maganizo ndi Matenda Osowa

Medics 4 Matenda Osowa ayambitsa maphunziro atsopano a pa intaneti, 'Mental Health and Rare Disease', omwe ali ndi maphunziro 8 okambirana.

DZIWANI ZAMBIRI

Chodzikanira

DEBRA siyingayimbidwe mlandu pazomwe zili patsamba lakunja.

Latest

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'.
Graeme Souness CBE ndi Isla Grist akumana ndi banja la Barnaby Webber pa BBC Breakfast

Pa 21 Ogasiti 2024, Wachiwiri kwa Purezidenti wa DEBRA Graeme Souness CBE ndi Isla Grist, omwe amakhala ndi recessive dystrophic EB (RDEB), adawonekeranso pa BBC Breakfast.

Malangizo Othandizira Odwala

Malangizo a Clinical Practice Guidelines (CPGs) ndi mndandanda wamalingaliro a chisamaliro chachipatala, kutengera umboni wopezedwa kuchokera ku sayansi ya zamankhwala ndi malingaliro a akatswiri. Ma CPG amathandiza akatswiri kumvetsetsa momwe angachitire ndi munthu yemwe ali ndi EB.
Zochitika za akatswiri

Phunzirani mwachindunji kuchokera kwa akatswiri azachipatala komanso akatswiri azachipatala. DEBRA imathandizira zochitika zosiyanasiyana kuti akatswiri apititse patsogolo chidziwitso ndi luso lawo mu EB.
Katswiri wazachipatala

Kugwira ntchito mogwirizana ndi a NHS kuti apereke chithandizo chaumoyo cha EB kwa anthu omwe ali ndi EB. Ma EB Center of Excellence ali ndi magulu osiyanasiyana omwe amapereka chithandizo chamankhwala cha akatswiri a EB.
EB kasamalidwe ka odwala

Anthu okhala ndi EB ali ndi khungu losalimba. Imatha kuchita matuza ndi kung'ambika mosavuta, kuphatikiza pakamwa ndi pakhosi. Funsani wodwalayo kapena banja langa kuti akupatseni malangizo. Iwo ndi akatswiri.

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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