Pitani ku nkhani

Njira yathu yofufuzira

Otsatira atatu adakhala pa siteji akukambirana. Kumbuyo kukuwonetsa mawu akuti, "DEBRA Journey: Changing amakhala limodzi mwachangu.
Director of Fundraising, Hugh Thompson, Co-Vice Chair of Trustees, Carly Fields ndi Director of Researching, Dr Sagair Hussain pa siteji pa Members Weekend 2022.

DEBRA ndiye wopereka ndalama zambiri ku UK epidermolysis bullosa (EB) kafukufuku. Tayika ndalama zoposa £22m ndipo takhala ndi udindo, kudzera mukupereka ndalama zofufuza ndikugwira ntchito padziko lonse lapansi, kuti tikhazikitse zambiri zomwe zikudziwika za EB.

Iyi ndi njira yathu yoyamba yofufuzira kuti tiyang'ane pa zomwe zimakhudza anthu omwe ali ndi EB. Cholinga chathu ndikupeza ndikupereka ndalama zothandizira kuti achepetse kukhudzidwa kwa tsiku ndi tsiku kwa EB, ndikuchiritsa kuthetsa EB.

Njira yathu yatsopano imayika zotsatira za odwala kutsogolo ndi pakati, ndikuyang'ana pa kafukufuku womasulira womwe udzakhala ndi zotsatira zabwino kwa omwe ali ndi EB lero. Tipereka ndalama zasayansi zapamwamba kwambiri padziko lonse lapansi zomwe zitha kuperekera odwala a EB.

Chithunzi chosonyeza njira zamachiritso zachipatala zomwe zikuyang'ana kwambiri pamankhwala ndi moyo wabwino, ndi magawo okhudza kukula kwa mapaipi, kubwezeretsanso mankhwala, kumvetsetsa EB, kafukufuku, ndi chithandizo.
Chithunzi chosonyeza njira zathu zofufuzira.

Zofunikira zathu zinayi zazikuluzikulu zofufuza ndizomwe timawona kuti zitha kupereka zotsatira kwa anthu omwe ali ndi EB. Ali:

  • Gwiritsani ntchito kukonzanso mankhwala ndikukhazikitsa mapulogalamu ozindikira mankhwala kuti afulumizitse kupeza chithandizo.
  • Wonjezerani ndalama pamitu yofufuza yomwe imayang'ana odwala.
  • Pitirizani kuyika ndalama kuti mumvetse bwino zomwe zimayambitsa ndi kupitilira kwa EB komanso gawo la chitetezo chamthupi.
  • Ikani ndalama zambiri mum'badwo wotsatira wa ofufuza a EB.

Tikuyitanitsa gulu la asayansi, opereka ndalama ndi omwe timagwira nawo ntchito m'makampani athu kuti abwere kudzabwera nafe paulendowu kuti apititse patsogolo luso la kafukufuku wa EB.

Mapulogalamu ndiwolandiridwa kuchokera kumaphunziro onse odzipereka kukonza miyoyo ya anthu omwe ali ndi EB.

Ndi mitundu yanji ya kafukufuku yomwe DEBRA imathandizira?

To kusankha ntchito zofufuza zomwe ziyenera kuthandizidwa ndi DEBRA UK, tili ndi madera anayi omwe tikuganiza kuti angathandize kwambiri mabanja omwe akuvutika ndi EB.

Werengani za ntchito zofufuza za EB zomwe tili ndalama pano.

Mankhwala omwe awonetsedwa kale kuti ndi otetezeka komanso kuchepetsa zizindikiro za mikhalidwe ina akhoza kuyesedwa pa zizindikiro za EB.

Kafukufuku wokhudza EB, eczema, psoriasis, khansa yapakhungu kapena matenda ena apakhungu angathandize kupeza chithandizo chochepetsera, kuyimitsa ndi/kapena kusintha zizindikiro za EB.

 

Matupi athu amapangidwa ndi mapuloteni ambiri osiyanasiyana omwe amagwira ntchito limodzi. Malingana ndi puloteni yomwe imasweka, komanso momwe imasweka, timapeza mtundu wina wa EB ndi zizindikiro zosiyana. 

  • Zizindikiro zapakhungu zimaphatikizapo matuza opweteka omwe amatha kusokoneza kuyenda / kuyenda ndikuyambitsa matenda, zipsera, kukhuthala kwa khungu ndi misomali, kuphatikiza zala zala / zala ndi tsitsi. 
  • Mwayi wokhala ndi khansa yapakhungu (Squamous Cell Carcinoma, SCC) imachulukitsidwa kwa anthu ena omwe ali ndi Dystrophic EB. 
  • Pamwamba pa maso amatha kukhudzidwa ndikupangitsa maso kukhala owawa/owuma komanso osawona.
  • Mzere wa mkamwa, mmero ndi mphuno ukhoza kukhudzidwa ndi matuza omwe amachititsa kuvutika kutafuna, kumeza ndi kuyankhula zomwe zingayambitse kuperewera kwa zakudya m'thupi, kuchepa kwa magazi m'thupi, kuchedwa kukula komanso kupuma. 
  • Mano enamel sangapangidwe monga momwe amayembekezera ndipo zingakhale zovuta kuyeretsa mano bwino chifukwa cha ululu wa matuza mkati mwa mkamwa. 
  • Ululu ndi kuyabwa ndi zizindikiro zazikulu.

 

Kufufuza zomwe zimayambitsa EB ndi zomwe zimapangitsa kuti zikhale zovuta kapena bwino pakapita nthawi. 

Kumvetsetsa zomwe zimayambitsa zizindikiro za EB ponena za maselo ndi mapuloteni zidzathandiza ofufuza amtsogolo kuti azisankha bwino mankhwala ndi mankhwala atsopano.

 

Timafunikira ofufuza abwino kwambiri kuti adziwe za EB ndikukhala ndi mwayi wochita kafukufuku womwe ungatithandize kulimbana ndi EB.