Mamembala a DEBRA, Isla ndi Andy Grist

Ndife gulu lachifundo la anthu okhala nawo epidermolysis bullosa (EB) ku UK. Ndife odzipereka kuthandiza gulu la EB ndi ntchito zosiyanasiyana zolimbikitsa moyo wabwino, kaya ndi mamembala a DEBRA kapena ayi. Komabe, kukhala membala wa DEBRA kumapangitsa kuti zikhale zosavuta kupeza mautumiki athu ndi mapindu apaderadera. Kungokhala membala, mupanganso kusintha kwa gulu lonse la EB.

Tili ndi gulu lodzipereka kuthandizira anthu omwe ali ndi EB powapatsa chidziwitso ndi upangiri kuphatikiza zothandiza, zachuma, zolimbikitsa komanso zolimbikitsa. Kukhala membala kumaperekanso mwayi wolumikizana ndi ena omwe akukhala ndi EB, kupita ku zochitika zapadera ndikuthandizira kudziwitsa komanso kulimbikitsa ukadaulo wa EB.

DEBRA imatanthauza zambiri kwa ife. Iwo atithandiza m’njira zambiri. Nthawi iliyonse ndikakhala ndi vuto, Woyang'anira Thandizo Wathu amatipatsa upangiri waukadaulo, chithandizo chamalingaliro komanso chidziwitso chofunikira komanso chandalama chomwe sitikanatha kuzipeza. 

Membala wa DEBRA

Inu mukhoza kukhala kwaulere Membala wa DEBRA ngati inu:

• ali ndi matenda a EB kapena akuyembekezera kupezeka kwa EB.
• ndi wachibale kapena wosamalira osalipidwa wa wina yemwe ali ndi EB.

Mutha kukhalanso membala ngati: 

• ndi akatswiri azaumoyo (kuphatikiza olera olipidwa) okhazikika mu EB kapena ali ndi chidwi ndi EB.
• ndi ofufuza okhazikika pa EB kapena ali ndi chidwi ndi EB.

 

Lemberani pa intaneti kuti mukhale membala

 

Ngati muli ndi mafunso kapena mukufuna thandizo kuti mumalize ntchito yanu, gulu lathu la Member Services lidzakhala lokondwa kukuthandizani. Mutha imelo [imelo ndiotetezedwa] kapena tiimbireni 01344 771961 (njira 1).

 

Phindu la umembala

Kugawana zokumana nazo, upangiri komanso kukumana ndi ena omwe amamvetsetsa zovuta za EB kunali kofunika kwambiri.

Membala wa DEBRA

Umembala ndi kwaulere ndipo imakupatsirani mwayi wosiyanasiyana * kuphatikiza:

• Gulu lathu la Community Support omwe amapereka chidziwitso; Thandizo lothandiza, lachuma komanso lamalingaliro; chitsogozo; kuyimira m'malo mwako; ndi zikwangwani zamabungwe ndi ntchito zina zomwe zingakhale zothandiza;
• Nyumba za tchuthi za DEBRA* m'mapaki opambana a 5-star park kuzungulira UK, opangidwa mwapadera kuti akhale oyenera anthu okhala ndi EB. Zonse zilipo pamitengo yochotsera;
• zosiyanasiyana zochitika* kwa mamembala chaka chonse. Misonkhano yapaintaneti, zokambirana za akatswiri a EB, zochitika zachigawo ndi dziko;
• makalata amakalata okhazikika akugawana zidziwitso zaposachedwa za kafukufuku ndi mankhwala a EB, nkhani, zosintha pa mwayi watsopano, ndi zambiri zothandiza;
• thandizo la mamembala* kukonza zodziyimira pawokha komanso moyo wabwino wa anthu okhala ndi EB;
• kuchotsera mu 100+ yathu malo ogulitsa zachifundo ndi opereka mankhwala osankhidwa;
• mwayi woti kulowerera, monga kulowa m'magulu athu okumana nawo, kuthandizira kukonza kafukufuku wathu, kukhudza mapulani opezera ndalama, kugawana nkhani zanu, kapena kudzipereka.

*Migwirizano ndi zikhalidwe zikugwiritsidwa ntchito

Kuwona mkati mwa DEBRA's nyumba yochezera yaposachedwa kwambiri ku Newquay.

Tili pano kuti tikuthandizeni ndi zovuta zomwe mungakumane nazo, ndikukupatsani mautumiki osiyanasiyana omwe mwachiyembekezo angapangitse kusiyana. Mutha kudziwa zambiri zamamembala athu powerenga zomwe zili pamwambapa.

Chonde chitani kambiranani ngati mukufuna kulankhula za chirichonse chimene ife kupereka.

DEBRA imandithandiza kumvetsetsa kupita patsogolo kwa kafukufuku yemwe akupangidwa ngati akufuna kuchiritsa kapena momwe angasamalire bwino matendawa.

Membala wa DEBRA

 

Lemberani pa intaneti kuti mukhale membala

 

Monga membala wa DEBRA mumapanga kusiyana

Kukhala membala sikungokupatsani mwayi wopeza zabwino zonsezi. Imathandiza DEBRA ndi gulu lonse la EB.

Pongokhala membala, mumalimbitsa dera lathu. Tikakhala ndi mamembala ambiri, zimakhala zosavuta kuti tiwonetse kuchuluka kwa anthu omwe akukhudzidwa ndi EB tikamapempha mabungwe ena ndi boma kuti apititse patsogolo chithandizo kwa aliyense amene ali ndi vutoli.

Mamembala ambiri omwe amagawana zomwe akumana nazo, m'pamenenso titha kuyimira gulu lonse la EB. Zimatipatsa kumvetsetsa kwakukulu kwa zomwe anthu okhala ndi mitundu yonse ya EB akukumana nazo ndi zomwe akufunikira. Mwachitsanzo, mamembala athu adatenga nawo gawo pagulu lathu Maphunziro a EB Insights ndipo adatipatsa chidziwitso chokwanira, chamtengo wapatali chomwe tingagwiritse ntchito kuti athandize gulu la EB chithandizo chomwe akufunikira.

Ndipo ngati mungafune kutenga nawo mbali ngati membala, mudzakhala ndi mwayi:

• thandizirani kudziwitsa za EB pogawana nkhani yanu;
• thandizani anthu ena okhala ndi EB kupeza DEBRA ndikukhala mamembala kuti alandire chithandizo chomwe akufunikira;
• tithandizeni kusankha kafukufuku woti tipeze ndalama kupeza mankhwala othandiza. Tiuzeni zomwe zili zofunika kwambiri kwa inu;
• tithandizeni kupatsa ofufuza, andale, ma GP ndi othandizira kumvetsetsa bwino momwe EB imakhudzira moyo wanu. Izi zitha kukhudza chitsogozo cha kafukufuku wawo, ndondomeko ndi chithandizo chomwe amapereka kwa anthu okhala ndi EB;
• langizani atsogoleri a DEBRA pamalingaliro athu ngati achifundo, ndipo onetsetsani kuti mawu anu ali pamtima pa chilichonse chomwe timachita.

Potenga nawo mbali, mamembala athu akhudza mfundo zokhudzana ndi EB, zathandiza DEBRA kusankha momwe timagwiritsira ntchito ndalama zathu pofufuza, adapeza mitundu ina ya EB yovomerezeka kuti iwonetsedwe asanabzalidwe, ophunzira atsopano ndi odzipereka za tanthauzo la kukhala ndi EB, ndikuthandizira kupeza chithandizo chatsopano cha EB chovomerezeka pa NHS. Ndi zina zambiri.

Dziwani zambiri apa za momwe mungatengere DEBRA.

 

Lemberani pa intaneti kuti mukhale membala 

 

Sinthani zambiri zanu

Ngati ndinu membala kale koma mwasintha manambala anu, kapena mukufuna kuwonjezera ena ku umembala wanu, chonde tidziwitseni kudzera pa kusintha kwa tsatanetsatane mawonekedwe.

Ngati simuli membala (kutanthauza kuti mulibe nambala ya umembala; izi zitha kugwira ntchito kwa opereka, opereka ndalama, othandizira, odzipereka kapena makasitomala ogulitsa) ndipo mukufuna kusintha zambiri nafe, chonde titumizireni pa [imelo ndiotetezedwa] kapena kumaliza zathu kusintha kwa tsatanetsatane mawonekedwe.

Ngati muli ndi mafunso, chonde imelo [imelo ndiotetezedwa] kapena tiimbireni 01344 771961 (njira 1). Ndife okondwa kukuthandizani ngati mukufuna thandizo kuti mudzaze fomuyi.

  

Khalani nawo mbali

Timapereka njira zingapo zomwe mamembala angatengerepo kanthu kaya pogawana malingaliro ndi malangizo, kuthandiza kudziwitsa anthu za EB, kulumikizana ndi ena agulu la EB kapena kuthandizira kukweza ndalama.

Ngati mungafune kuthandiza DEBRA UK kapena gulu la EB kudzera mwa ife, kapena ngati muli ndi kena kake kofotokozera zomwe munakumana nazo mukukhala ndi EB, tingakonde kumva kuchokera kwa inu: [imelo ndiotetezedwa]. 

 

Nazi njira zina zomwe mungatengere nawo ngati membala:

  

Lowani nawo chochitika

Mamembala ali ndi mwayi kujowina zochitika zosiyanasiyana - pa intaneti komanso pamunthu. Imeneyi ikhoza kukhala njira yofunikira yolumikizirana ndi ena omwe amamvetsetsa zovuta za EB, kupanga mabwenzi, kugawana malangizo ndi kusangalala popanda kufotokoza mkhalidwe wanu. Timakhalanso ndi zokambirana pafupipafupi ndi akatswiri monga EB Nutritionists, Podiatry akatswiri ndi zina. 

Ndizosangalatsa kuwona anthu ena omwe ali ndi EB ndipo ndizabwino kukhala ndi mwayi wogawana chidziwitso ndikufunsa mafunso.

Membala wa DEBRA

 

Gawani zokumana nazo zanu

Zina mwazinthu zofunika kwambiri kwa mamembala zimachokera kwa ena agulu la EB. Pogawana nafe zomwe zidachitika, malingaliro okhudza malonda kapena malo ochezeka a EB oti mupiteko, titha kugawana izi ndi mamembala ena kuti tipindule kwambiri ndi gulu la EB. Palibe chidziwitso kapena nsonga yayikulu kwambiri kapena yaying'ono kuti mugawane ndipo mutha kukhala osadziwika ngati mukufuna.

Lumikizanani ndi Gulu lathu la Umembala kudzera [imelo ndiotetezedwa] kugawana zomwe mwakumana nazo.

 

Dziperekeni kwa ife

Nthawi zonse timafunikira odzipereka kuti atithandize kuyendetsa masitolo athu ogulitsa ku England ndi Scotland, kapena pazochitika zopezera ndalama, misonkhano ndi zochitika zina. Kudzipereka kumatha kukhala kopindulitsa kwambiri, kumakuthandizani kuti mulumikizane ndi anthu amdera lanu, kupanga anzanu atsopano, kukulitsa luso lanu ndi luso lanu komanso kukulitsa thanzi lanu. Onani zathu gawo lodzipereka kuti mudziwe zambiri ndikugwiritsa ntchito.

 

Khalani membala lero

Zikomo kwambiri potikhazikitsa ngati mamembala. Ndizosangalatsa kudziwa kuti pali bungwe ngati DEBRA kutithandiza paulendo wathu watsopanowu.

Membala wa DEBRA

Ngati mungafune kupindula ndi umembala wa DEBRA, chonde lembani pansipa, kapena ngati muli ndi mafunso, lankhulani ndi gulu pa [imelo ndiotetezedwa] Kapena kuyitana 01344 771961 (njira 1).

 

Lemberani pa intaneti kuti mukhale membala | Sinthani zambiri zanu

 

Ngati muli ndi mafunso kapena mukufuna thandizo kuti mumalize ntchito yanu, chonde imelo [imelo ndiotetezedwa] kapena tiimbireni 01344 771961 (njira 1).

 

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