Nkhani za EB

Nkhani za EB - Blog yolembedwa ndi DEBRA UK

Blog ya nkhani za EB ndi malo oti anthu amgulu la EB azigawana zomwe adakumana nazo pamoyo wawo wa EB. Kaya ali ndi EB okha, amasamalira wina yemwe ali ndi EB, kapena amagwira ntchito m'chipatala kapena kafukufuku wokhudzana ndi EB.

Malingaliro ndi zokumana nazo za gulu la EB zomwe zidafotokozedwa ndikugawidwa kudzera muzolemba zawo zamabulogu a EB ndi awoawo ndipo sizimayimira malingaliro a DEBRA UK. DEBRA UK siyoyankha pamalingaliro omwe amagawidwa mu EB nkhani blog, ndipo malingaliro amenewo ndi a membala aliyense payekha.

Ulendo wanga kudzera mu maphunziro ndi EB

Daval, yemwe amakhala ndi autosomal recessive epidermolysis bullosa simplex, akugawana nkhani yake ya ulendo wake kudzera mu maphunziro komanso kutenga nawo mbali ndi DEBRA UK. Werengani zambiri

Kusewera rugby ndi chinthu chomaliza chomwe anthu amayembekezera kwa munthu yemwe ali ndi EB

Mwachiwonekere khungu langa likung'ambika mosavuta ndipo rugby ndi yaukali koma sindilola kuti izi zindiletse. Sindinalole khungu langa lindiletse kuchita zomwe ndikufuna. Werengani zambiri

Simudziwa zomwe EB angakuponyereni

Ndikukhumba kuti anthu amvetse kuti EB ikhoza kukhala yolemala, koma ndithudi imakhala ndi maganizo Werengani zambiri

Nkhani ya Kai

Sindimapita kukasewera pa nthawi ya nkhomaliro chifukwa kutentha ndi thukuta zimachititsa matuza, ngakhale sindikuyenda. Ndiye kuti ndipewe zimenezo, ndikhala m’katimo n’kukhala pansi. Werengani zambiri

Kukwatiwa ndi zovuta zowonjezera zokhala ndi EBS

Heather, wazaka 32 yemwe amakhala ndi epidermolysis bullosa simplex (EBS), akugawana nkhani yake yapadera yokonzekera ukwati wake wa February ndi Ash, chikondi cha moyo wake. Werengani zambiri

Banja la Hinton - ulendo wathu wa EBS

Chifukwa cha chithandizo chanzeru chomwe timalandira kuchokera ku gulu la EB ku GOSH ndi Gulu Lothandizira Anthu ku DEBRA UK, sitikumvanso tokha ndi EB. Werengani zambiri

Kukhala ndi EB sikophweka

Monga wodwala EB simplex, sindingathe kuthokoza kwambiri thandizo lomwe ndalandira m'zaka zingapo zapitazi, ndipo ndikanakonda ndikanadziwa za DEBRA UK kalekale. Kukhala ndi EB simplex kapena vuto lina lililonse la EB sikophweka, koma kudziwa kuti pali chithandizo ndi upangiri nthawi iliyonse kwandithandiza kwambiri pa moyo wanga ndi momwe zinthu ziliri. Werengani zambiri

Kodi ndimotani ndipo nchifukwa ninji mkhalidwe umenewu unagwera mwadzidzidzi banja langa popanda chenjezo?

Sindinamvepo za EB ndipo ndidaganiza kuti matuza omwe amawonekera pathupi laling'ono la Georgia atha kuchira - koma dokotala atandifotokozera kuchuluka kwa EB kwa ine ndidapeza zovuta kuzimvetsa. Werengani zambiri

EB yandipweteka m'thupi komanso m'maganizo

Zowawa zakuthupi, ndi kumverera kwatsiku ndi tsiku kwa kuyenda m'mazira otentha, kuyabwa kosalamulirika kuchokera ku mabala ochiritsira, ndi ululu wamaganizo umene umadziwonetsera kupyolera mu kupsinjika maganizo kwakukulu komwe kumadza chifukwa cha zaka za kuvulala kwakuthupi ndi maganizo. Werengani zambiri

Kusamalira mabala, kusamalira ululu, ndi kupewa kuvulala kwatsopano ndi njira yathu yamoyo

Kukhala ndi EB kwapangitsa kuti zikhale zovuta kupikisana pamasewera pazaka zambiri kuphatikiza chidwi changa: mpira. DEBRA andithandizira pa mwayi wanga watsopano wosewera ku Newport Town Football Club ndipo ndimwayi kuwayimilira ndikusewera. Werengani zambiri

Matuza akabwera, simungathe kuwachotsa

Kutentha kukakhala kozizira kumakhala ngati alibe EB, koma kutentha kukangokwera, matuza amayamba, ndiyeno sangathenso kuchita zomwe anzake amachita. Ndi zosweka mtima kuwona. Werengani zambiri

EB ndiye mphamvu yomwe idandipanga kukhala yemwe ndili

Ndili ndi EB, nthawi zonse ndimakhala, koma zinthu zambiri zimatha kusintha, tsiku lina ndikufuna kunena kuti NDAKHALA NDI EB! Werengani zambiri

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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.

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.

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