Hla mus rau cov ntsiab lus

Peb lub tswv yim tshawb fawb

Peb pawg neeg ua haujlwm zaum ntawm theem muaj kev sib tham. Lub nraub qaum qhia cov ntawv nyeem, "DEBRA Journey: Hloov lub neej sai dua ua ke.
Tus Thawj Saib Xyuas Nyiaj Txiag, Hugh Thompson, Co-Vice Chair ntawm Trustees, Carly Fields thiab Tus Thawj Coj ntawm Kev Tshawb Fawb, Dr Sagair Hussain nyob rau theem ntawm Cov Tswv Cuab Hnub So 2022.

DEBRA yog qhov loj tshaj plaws UK pab nyiaj ntawm Epidermolysis bullosa (EB) kev tshawb fawb. Peb tau nqis peev ntau dua £ 20m thiab tau ua lub luag haujlwm, los ntawm kev nrhiav nyiaj pioneering thiab ua haujlwm thoob ntiaj teb, tsim kom muaj ntau yam tam sim no paub txog EB.

Nov yog peb thawj lub tswv yim tshawb fawb los tsom rau qhov cuam tshuam thiab qhov tseem ceeb rau cov neeg nyob nrog EB. Peb lub hom phiaj yog nrhiav thiab pab nyiaj kho mob kom txo tau qhov cuam tshuam ntawm EB txhua hnub, thiab kho kom tshem tawm EB.

Peb lub tswv yim tshiab muab cov neeg mob tso tawm rau pem hauv ntej thiab nruab nrab, nrog rau kev tsom mus rau kev tshawb fawb kev txhais lus uas yuav muaj txiaj ntsig zoo rau cov neeg nrog EB hnub no. Peb yuav pab nyiaj rau kev tshawb fawb ntawm qhov zoo tshaj plaws thoob plaws ntiaj teb uas muaj peev xwm xa tau rau cov neeg mob EB.

Daim duab qhia txog lub tswv yim rau kev kho mob tsom mus rau kev kho mob thiab kev ua neej zoo, nrog rau ntu ntawm kev txhim kho cov kav dej, kev siv tshuaj, kev nkag siab EB, kev tshawb fawb, thiab kev kho mob.
Daim duab qhia peb lub tswv yim tshawb fawb.

Peb plaub qhov kev tshawb fawb tseem ceeb tshaj plaws yog cov uas peb pom feem ntau yuav xa tawm rau cov neeg nyob nrog EB. Lawv yog:

  • Nqis hauv tshuaj re-purposing thiab txhim kho cov kev tshawb nrhiav tshuaj kom nrawm nrhiav kev kho mob.
  • Txhawb kev nqis peev hauv cov ntsiab lus tshawb fawb ntawm tus neeg mob.
  • Txuas ntxiv mus nqis peev kom nkag siab zoo dua qhov ua rau thiab kev loj hlob ntawm EB thiab lub luag haujlwm ntawm lub cev tiv thaiv kab mob.
  • Kev nqis peev ntau hauv EB cov neeg tshawb fawb tiam tom ntej.

Peb tab tom hu xov tooj rau cov zej zog kev tshawb fawb, cov nyiaj txiag thiab peb cov neeg koom tes hauv kev lag luam tuaj koom nrog peb ntawm txoj kev taug kev no kom nrawm EB kev tshawb fawb tshiab.

daim ntawv sau npe txais tos los ntawm txhua qhov kev qhuab qhia tau cog lus los txhim kho lub neej ntawm cov neeg nrog EB.

Nyeem tag nrho cov tswv yim tshawb fawb

Hu rau pab neeg tshawb fawb

Tshawb nrhiav kab mob tsawg 

 

Peb qhov kev tshawb fawb lub tswv yim siv tus account cov xwm txheej ntawm EB yog 'tsis tshua muaj kab mob'. Recruiting pua pua los yog txhiab tus cov neeg nrog EB los koom nrog hauv theem 3 kev sim tshuaj is nyuaj.Recouping tus nqi ntawm kev tsim kho tshiab, txawm li cas los xij lub neej hloov nws yuav yog rau cov tsev neeg nrog EB, tej zaum yuav nyuaj dua rau cov tub ua lag luam yog tias tus naj npawb ntawm cov neeg siv tsawg.  Understanding qhov ua rau IB and repurposing kev kho mob uas twb muaj lawm yam xyuam xim hauv kev siv los ntawm cov neeg nrog lwm yam, zoo ib yam Cov xwm txheej yog ib feem tseem ceeb ntawm peb lub tswv yim. 

 

Hom kev tshawb fawb dab tsi DEBRA pab nyiaj?

To txiav txim siab seb qhov kev tshawb fawb twg yuav tsum tau txais nyiaj los ntawm DEBRA UK, peb muaj plaub qhov chaw uas peb xav tias yuav pab tau cov tsev neeg txom nyem nrog EB.

Nyeem txog EB cov haujlwm tshawb fawb peb yog tam sim no nyiaj txiag.

Kev kho mob uas twb tau pom tias muaj kev nyab xeeb thiab txo cov tsos mob ntawm lwm yam mob tuaj yeem kuaj tau ntawm EB cov tsos mob.

Kev tshawb fawb txog EB, eczema, psoriasis, mob qog noj ntshav lossis lwm yam mob ntawm daim tawv nqaij yuav pab nrhiav kev kho kom qeeb, nres thiab / lossis rov qab cov tsos mob ntawm EB.

 

Peb lub cev yog tsim los ntawm ntau cov proteins sib txawv ua haujlwm ua ke. Nyob ntawm seb tus neeg cov protein puas lawm, thiab nws tawg li cas, peb tau txais ntau hom EB nrog cov tsos mob sib txawv. 

  • Cov tsos mob ntawm daim tawv nqaij muaj xws li mob hlwv uas tuaj yeem cuam tshuam rau kev taug kev / txav mus los thiab ua rau muaj kab mob, caws pliav, tawv nqaij thiab rau tes, fusion ntawm ntiv taw / ntiv tes thiab plaub hau poob. 
  • Muaj feem yuav mob qog noj ntshav (Squamous Cell carcinoma, SCC) yog nce rau qee tus neeg nrog Dystrophic IB. 
  • Qhov saum npoo ntawm lub qhov muag tuaj yeem cuam tshuam ua rau mob / qhuav qhov muag thiab tsis pom kev.
  • Lub hauv pliaj ntawm lub qhov ncauj, caj pas thiab qhov ntswg tuaj yeem cuam tshuam los ntawm blistering ua rau nyuaj rau zom, nqos thiab hais lus uas tuaj yeem ua rau muaj kev noj zaub mov tsis txaus, ntshav tsis txaus, ncua kev loj hlob thiab ua pa nyuaj. 
  • Cov hniav enamel yuav tsis tsim raws li qhov xav tau thiab nws yuav nyuaj rau kev ntxuav cov hniav kom zoo vim qhov mob los ntawm cov hlwv hauv qhov ncauj. 
  • Mob thiab khaus yog cov tsos mob tseem ceeb.

 

Tshawb nrhiav cov laj thawj ntawm EB thiab dab tsi ua rau nws hnyav dua lossis zoo dua nyob rau lub sijhawm. 

Kev nkag siab txog qhov ua rau ntawm EB cov tsos mob ntawm cov hlwb thiab cov proteins yuav pab cov kws tshawb fawb yav tom ntej los txiav txim siab zoo txog cov tshuaj tshiab thiab kev kho mob.

 

Peb xav tau cov kws tshawb fawb zoo tshaj plaws kom paub txog EB thiab muaj lub sijhawm los ua cov kev tshawb fawb uas yuav pab peb tawm tsam EB.