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Kubwezeretsanso mankhwala a EB
Kugwiritsanso ntchito mankhwala osokoneza bongo ndi njira yogwiritsira ntchito mankhwala omwe alipo kale pamankhwala atsopano kapena matenda omwe sanasonyezedwe kale.
Izi zimapanga mwayi wosangalatsa kwa anthu omwe ali ndi EB, ndi zina zosowa kwambiri, kumene mtengo wapamwamba wopanga mankhwala atsopano (mpaka £ 1b pa mankhwala) komanso nthawi yogulitsa (zaka 10-20) nthawi zambiri imapanga malonda. zosasangalatsa makampani opanga mankhwala.
Kubwezeretsanso mankhwala poyerekeza kumawononga ndalama zokwana £500k pa mankhwala ndipo kumatha kutenga zaka ziwiri zokha.
Onani tchati pansipa chomwe chikufanizira nthawi yopangira chithandizo chamankhwala chatsopano ndi nthawi yobwezeretsanso mankhwala.
Poyamba mayesero a zachipatala amangochitika pa anthu ochepa chabe ngati pali zotsatira zosayembekezereka, izi zimatchedwa gawo 1. Ngati gawoli likuwonetsa kuti chithandizo chatsopano ndi chotetezeka, ndiye kuti chikhoza kuyesedwa kwa anthu ambiri omwe ali ndi zizindikiro. muyeso la gawo 2. Komabe, ngati chithandizo chomwe chikuyesedwa chikugwiritsidwa ntchito kale ndikuchiza matenda ena, gawo loyamba likhoza kudumpha chifukwa mankhwalawa awonetsedwa kale kuti ndi otetezeka. Izi zimatchedwa repurposing mankhwala, ndipo ndi gawo lofunika kwambiri lathu Njira yofufuzira ya EB.
Kubwezeretsanso mankhwala ndi njira yachangu yopezera chithandizo chamankhwala chothandiza kwa anthu omwe ali ndi mitundu yonse ya EB, chifukwa sichiphatikiza gawo 1. Ndizotsika mtengo chifukwa zimayang'ana pakuyesa mankhwala omwe alipo omwe amagwiritsidwa ntchito pochiza matenda ogwirizana nawo.
Kwa EB pali mankhwala omwe alipo kale mkati mwa NHS omwe amatha kuchiza matenda ena otupa a khungu, kuphatikizapo psoriasis ndi atopic dermatitis (chikanga chachikulu), chomwe chingathe kusintha kwambiri zizindikiro za EB monga matuza ndi moyo wonse. Kutsimikizira mphamvu ya mankhwalawa pochiza EB ngakhale pamafunika kuyezetsa mayesero a zachipatala.
Njira yathu yofufuzira ya EB imayika patsogolo ndalama pakubwezeretsanso mankhwala kuti tipeze chithandizo chosintha moyo pamtundu uliwonse wa EB.
Pomvetsetsa momwe chithandizo chimagwirira ntchito komanso momwe chizindikiro cha EB chimayambira, ofufuza a EB amatha kuzindikira mankhwala omwe angathe kubwezeretsedwanso.
Madokotala apadera angapereke odwala ochepa a EB mwayi woyesera mankhwala a 'off-label'. Izi zikutanthauza kuti ili ndi chilolezo chochiza matenda ena osati EB. Amaphunzira zotsatira mosamala ndikusindikiza zotsatira zawo ngati phunziro. Komabe, kukonzanso chithandizo, a mayesero a zachipatala okhudza odwala ambiri adzafunika kuchitidwa kuti atsimikizire kuti zotsatira zabwino zomwe zawonedwa mu phunziro loyamba sizinangochitika mwamwayi.
Njira yogulitsiranso mankhwala yatsimikiziridwa kuti imapulumutsa miyoyo.
N’kutheka kuti inunso munagwiritsapo ntchito mankhwala opangidwanso. Mliri wa COVID-19 utayamba, panali kuthamangira kubwezanso mankhwala omwe analipo omwe angathandize. Madokotala anagwiritsa ntchito chidziwitso chawo cha kachilomboka posankha mankhwala, ndipo mayesero azachipatala adayambitsidwa kuti awone ngati zomwe akuganiza zophunzitsidwa zinali zolondola.
Aspirin ndi chitsanzo cha mankhwala omwe amadziwika bwino omwe asinthidwa bwino. Kuyambira kugwiritsidwa ntchito kwake polimbana ndi ululu, kutentha thupi, ndi kutupa, tsopano amagwiritsidwa ntchito pamlingo wocheperako kuchepetsa mwayi wa matenda a mtima ndi sitiroko.
Nthawi zina, zotsatira za mankhwala zimalola kukonzanso, mwachitsanzo, Viagra idapangidwa kuti ichiritse angina, koma zotsatira zodziwika bwino zinapangitsa kuti abwezeretsedwenso kuti athetse vuto la erectile. Komanso, mankhwala ambiri osiyanasiyana adakonzedwanso bwino kuti athetse khansa ya m'mawere kuphatikiza maantibayotiki, ma anti-virus, machiritso a matenda a autoimmune, mankhwala a khansa ina ndi mankhwala omwe adagwiritsidwa ntchito pothandizira kusabereka.
Anthu ena okhala nawo zinthu osowa kuphatikizapo tuberous sclerosis, alkaptonuria, ndi autoimmune lymphoproliferative syndrome apindulanso ndi kafukufuku wokonzanso mankhwala osokoneza bongo komanso mayesero achipatala omwe adapangitsa kuti avomereze mankhwala omwe alipo kuti athetse matendawa.
Mankhwala ambiri amakhala ndi zowonjezera zomwe zikutanthauza kuti atha kugwiritsidwa ntchito pochiza zizindikiro zina osati zomwe adapatsidwa chilolezo. Kumene zotsatira zake zimakhala zochepetsera matuza a pakhungu, kutupa, kuyabwa, kapena mabala, mankhwalawa angakhale othandiza makamaka kwa anthu omwe ali ndi EB.