Skip to content

Patlisiso ea rona

DEBRA UK ke motšehetsi e moholo oa UK oa Epidermolysis bullosa (EB) lipatlisiso. Re tsetetse chelete e fetang £24m 'me re bile le boikarabelo, ka ho tšehetsa liphuputso tsa bopula-maliboho ka lichelete le ho sebetsa linaheng tse ling, bakeng sa ho theha boholo ba se tsejoang ka EB.

Infographic e bonts'a merero ea lipatlisiso tse 161, bafuputsi ba 127, libaka tsa lipatlisiso tse 63 ho pholletsa le linaha tsa 16, liithuti tse 7 tsa PhD, liteko tsa kliniki tse 5, le lichelete tse fetang limilione tse 24.5.

Re na le pono ea lefatše leo ho seng motho ea nang le bothata ba letlalo la epidermolysis bullosa (EB). Leano la rona la ho etsa lipatlisiso e shebana le se bohlokoa ho batho ba phelang le EB. Takatso ea rona ke ho fumana liphekolo tse tla fokotsa tšusumetso ea letsatsi le letsatsi ea EB, le lipheko tsa ho felisa EB. Re tla tšehetsa mahlale a boleng bo holimo lefatšeng ka bophara a nang le monyetla oa ho isa bakuli ba EB.

Letsoho la liatlana le beha selaete sa khalase ka tlas'a microscope.

Liprojeke tsa rona tsa lipatlisiso tsa EB

DEBRA UK ke motšehetsi e moholo oa UK oa lipatlisiso tsa EB. Re fana ka lithuso ho bafuputsi ba nang le litsebo tsa saense le tsa bongaka tse amanang haholo le malapa a phelang le EB.
Sheba merero ea rona
Batho ba sebetsa 'moho ho pota-pota tafole e nang le lilaptop, lipampiri, linoelo tsa kofi le libuka tsa ho ngolla.

Leano la rona la ho etsa lipatlisiso

Leano la rona le lecha le beha liphetho tsa mokuli ka pele le bohareng, re tsepamisitse maikutlo lipatlisisong tsa phetolelo tse tla ba le phello e ntle ho ba nang le EB kajeno.
Ithute haholoanyane
Batho ba sebetsang ka lichate tsa khoebo le kerafo tafoleng, ba sebelisa laptop, notepad le fono.

Tšusumetso ea rona

Re bile le boikarabello, ka ho tšehetsa liphuputso tse fetolang bophelo ka lichelete, bakeng sa ho theha boholo ba se tsejoang ka EB.
Ithute haholoanyane
Motsamaisi oa Lipatlisiso oa DEBRA, Ngaka Sagair Hussain.

Sehlopha sa rona sa lipatlisiso

Kopana le Ngaka Sagair Hussain - Motsamaisi oa Lipatlisiso le Ngaka Abi Witherden - Motsamaisi oa Lichelete oa Lipatlisiso.
Kopana le sehlopha
Matsoho a mabeli a apereng liatlana tse tšoeu, tse tšoantšetsang tlhokomelo ea bophelo bo botle le balekane ba lipatlisiso, ba ts'oarana ka matsoho khahlanong le semelo se lefifi.

Basebetsi-'moho le rona ba lipatlisiso le basebetsi-'moho

Re sebelisana 'moho le ho sebetsa 'moho le litsebi le mekhatlo ea maemo a holimo e nang le thahasello e arolelanoang ho EB le maemo a mang a letlalo.
Kopana le balekane ba rona
Motho ea apereng seaparo se sesoeu, ea tšoanang le motho ea tsoang lebaleng la liteko tsa tleliniki, o tšoere pilisi e khubelu ka letsohong le letšehali le pilisi e putsoa ka ho le letona, liatla li shebile holimo.

Liteko tsa meriana

Fumana leseli mabapi le liteko tsa bongaka, mahlale a morao-rao a lipatlisiso tsa EB, hore na lithethefatsi li amoheloa joang, le lisebelisoa tse ling tsa bohlokoa.
Ithute haholoanyane
Motho o tšoere foto ea selefouno e nang le lefats'e le koahetsoeng ka mosaic ea lifahleho tse fapaneng tsa batho.

Lithuto tsa rona tsa temohisiso

Lithuto tsena li fana ka tlhahisoleseling ea bohlokoa mabapi le litlhoko tse sa fihlellehang tsa litho tsa DEBRA, lintho tsa bohlokoa lipatlisisong, le tlhahlobo ea lits'ebeletso tsa litho tsa rona.
Lithuto tsa rona tsa temohisiso

Na u ne u tseba…?

Haeba u mofuputsi ea sebetsang ho EB, u ka ba setho sa DEBRA UK. Botho ke mahala mme bo u fa monyetla oa ho fumana menyetla le liketsahalo tsa ho hokahana le ba bang sechabeng sa EB.
Eba setho sa DEBRA
Letšoao la DEBRA UK. Letšoao le na le litšoantšo tsa serurubele se seputsoa le lebitso la mokhatlo. Ka tlase, tagline e baleha "The Butterfly Skin Charity.
tsamaisoa ke  Ts'ebelisano ea Cookie ea GDPR
Boitsebiso ba Boinotši

Websaeteng ena e sebelisa di-cookie e le hore re ka u fa boiphihlelo bo botle ba mosebedisi. Boitsebiso ba li-cookie bo bolokiloe ho sebapali sa hau mme se etsa mesebetsi e kang ho u lemoha ha u khutlela hosaeteng ea rona le ho thusa sehlopha sa rona ho utloisisa likarolo tsa marang-rang tseo u li fumanang li thahasellisa le tse molemo haholo.