Pitani ku nkhani

Ophunzira zaumoyo

Monga katswiri wazachipatala mwina simunamuthandizepo wodwala epidermolysis bullosa (EB) ndipo mkhalidwewo ukhoza kukhala watsopano kwa inu chifukwa chakusoweka kwake. Komabe, zothandizira ndi chidziwitso zilipo kuti zikuthandizeni.

Dziwani zambiri za chithandizo chamankhwala cha NHS chomwe chinaperekedwa ndi EB, ndi momwe mungawathandizire; EB malangizo azachipatala; EB zothandizira ndi maphunziro; ndi ntchito yomwe DEBRA's EB Community Support Team imachita pothandizira akatswiri azaumoyo.  

Chiboliboli cha Mary Seacole chikuyima monyadira kutsogolo kwa gulu lalikulu lozungulira lamkuwa, lomwe lili mkati mwa malo obiriwira obiriwira.

NHS Specialist EB chisamaliro chaumoyo

Timagwira ntchito mogwirizana ndi a NHS kuti tipereke chithandizo chamankhwala cha EB chomwe chili chofunikira kwa anthu omwe ali ndi EB.
Dziwani zambiri
Munthu wokhala ndi bandeji miyendo atagona patebulo lopimidwa ndi achipatala, ali ndi magolovesi a buluu ndi nsalu pafupi.

Malangizo a EB Clinical Practice

Pezani malingaliro angapo a chisamaliro chachipatala cha EB kutengera umboni wopezedwa kuchokera ku sayansi ya zamankhwala ndi malingaliro a akatswiri.
Werengani zambiri
Dokotala wovala labu wanyamula chojambula chojambula, atayima mukhonde lachipatala lowala kwambiri ndi ogwira ntchito zachipatala komanso odwala kumbuyo.

Zothandizira azachipatala

Pezani zothandizira akatswiri ochiza ndi kuyang'anira chisamaliro cha odwala EB, kuphatikizapo zofalitsa ndi mwayi wophunzira.
Dziwani zambiri
Anthu omvera amamvetsera wokamba nkhani ali kutsogolo kwa chiwonetsero chazithunzi pazochitika.

Maphunziro a EB kwa akatswiri azaumoyo

DEBRA imathandizira zochitika zosiyanasiyana za akatswiri azaumoyo kuti apititse patsogolo chidziwitso ndi luso lawo mu EB.
Pezani chochitika
Kazembe wa DEBRA, Fazeel Irfan, ali ndi tsitsi lalifupi ndi magalasi, atavala malaya amtundu wopepuka, amakhala pampando wonyezimira pafupi ndi zenera lokhala ndi akhungu oyima, akuyang'ana pansi ndikumwetulira pang'ono.

EB kasamalidwe ka odwala

Pezani zambiri zofunika ndi malangizo othandizira odwala omwe ali ndi EB.
Dziwani zambiri

Kodi mumadziwa…?

Ngati ndinu katswiri wazachipatala (kuphatikiza olera olipidwa) okhazikika pa EB kapena mukugwira ntchito ndi odwala EB, mutha kukhala membala wa DEBRA UK. Umembala ndi waulere ndipo umakupatsani mwayi wothandizidwa, mwayi wochitapo kanthu, ndi zochitika kuti mulumikizane ndi ena agulu la EB.
Khalani membala wa DEBRA
Chizindikiro cha DEBRA UK. Chizindikirocho chimakhala ndi zithunzi za gulugufe wabuluu komanso dzina la bungwe. Pansi pake, mawu akuti "The Butterfly Skin Charity.
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