Kuyenda ndi EBS (2022)

Kafukufukuyu adamalizidwa mu 2022 ndikutsimikizira kuti anthu omwe ali ndi EBS amakankhira pansi mwamphamvu ndi mapazi awo poyenda kusiyana ndi anthu opanda matuza opweteka. Ofufuzawa akufuna kupitiriza ntchito yawo kuyesa zotsatira za masewera olimbitsa thupi ndi nsapato zapadera kapena insoles (orthotics) kuti athandize kufalitsa kupanikizika pamtunda wa phazi ndikupangitsa kuyenda momasuka.

Zotsatira zidasindikizidwa mu Briteni Journal of Dermatology ndi Journal of Investigative Dermatology ndipo idaperekedwa ngati poster kwa a Society for Investigative Dermatology.

Kafukufuku woyeserera wa akulu 21 omwe ali ndi EBS watsirizidwa. Kwa munthu aliyense, kupanikizika pansi pa mapazi ake pamene akuyenda kunafanizidwa ndi munthu wopanda EB koma wa msinkhu wofanana ndi kugonana. Zotsatirazo zinasonyeza kuti anthu omwe ali ndi EB ankayenda mosiyana, kuyika mphamvu zochepa pamapazi awo pamene akuyika chidendene kapena kukankhira pansi. Anthu omwe ali ndi EB omwe anali ndi matuza pamapazi awo adakankhira pansi ndikupanikizika kwambiri kuposa omwe analibe matuza. Ofufuzawo akusonyeza kuti kachitidwe koyenda kameneka kangathandize kuchepetsa matuza ndi ululu koma kungachititse kuti zikhale zovuta kuti muyende bwino mukamayenda pamalo osagwirizana. Kuyenda mosiyana chifukwa cha ululu wa EBS kungakhudze mphamvu ya minofu ndikuwonjezera chiopsezo cha kupweteka kwa mgwirizano ndi kuwonongeka. Ofufuzawa tsopano akupanga njira zoyesera kuthandiza anthu omwe ali ndi EBS kuti asayende mosiyanasiyana zomwe zingawathandize kuti azikhala osagwirizana komanso ateteze ziwalo ndi minofu yawo.
Zotsatirazi zidaperekedwa ku msonkhano wapachaka wa Society for Investigative Dermatology and British Association of Dermatologists mu 2022 komanso kwa mamembala a DEBRA pa Sabata la Mamembala athu mu Meyi 2022 ndi Dr Devecchi:

Deborah Falla, BPHty (Hons), PHD

Pulofesa Deborah Falla ndi Mpando wa Rehabilitation Science ndi Physiotherapy ku yunivesite ya Birmingham, UK ndipo ndi Mtsogoleri wa Center of Precision Rehabilitation for Spinal Pain (CPR Spine). Kafukufuku wake amagwiritsa ntchito luso laukadaulo la electrophysiological ndi biomechanical kuyesa kayendedwe ka anthu komanso momwe zimakhudzira kapena kusinthidwa potengera mayiko osiyanasiyana (monga kuvulala, kutopa, matenda, maphunziro ndi zowawa). Zokonda zake zofufuza zimaphatikizanso kukhathamiritsa kwa kayendetsedwe ka matenda opweteka a musculoskeletal ndi chidwi chapadera pa ululu wa msana. Wasindikiza mapepala opitilira 190 m'magazini apadziko lonse lapansi, owunikiridwa ndi anzawo, zolemba zopitilira 300 kuphatikiza nkhani zopitilira 35 zoyitanidwa / zazikuluzikulu ndipo adalandira zidziwitso zingapo ndi mphotho chifukwa cha ntchito yake kuphatikiza Mphotho ya Germany Pain Research mu 2014, George J. . Davies - James A. Gould Excellence in Clinical Inquiry Award mu 2009 ndi Delsys Prize for Electromyography Innovation mu 2004.

Pulofesa Falla ndi mlembi / mkonzi wa mabuku atatu kuphatikizapo atsopano omwe ali ndi mutu wakuti "Kusamalira matenda a ululu wa khosi: njira yodziwitsira kafukufuku" (Elsevier). Pulofesa Falla amagwira ntchito ngati Mkonzi Wothandizira wa Musculoskeletal Science & Practice, Journal of Electromyography and Kinesiology ndi IEEE Transactions on Neural Systems and Rehabilitation Engineering. Anali Purezidenti wa International Society of Electrophysiology and Kinesiology (ISEK) kuyambira 2016 mpaka 2018.

Pulofesa Adrian HM Heagerty BSc (Hons), MBBS, MRCP, MD, FRCP

Atasankhidwa kukhala Consultant Dermatologist pa chipatala cha Birmingham Skin ku 1995, mwayi unapezeka mu 1998 kuti ayambe dipatimenti yatsopano ya dermatology ku Solihull Hospital, gawo la Birmingham Heartlands Hospital ndipo tsopano ndi Heart of England Foundation Trust. Pulofesa Heagerty ali ndi maulalo ndi gulu lofufuza mu Epidermolysis Bullosa ndi Pachyonychia Congenita.

Mu ntchito yake monga registrar wamkulu, adatha kuzindikira mabanja omwe ali ndi EB simplex, (EBS) zomwe zinapangitsa kuti adziwe zomwe zinali zovuta mu EBS. Kuphatikizidwa ndi ntchito ya Junctional ndi Dystrophic mafomu a EB, ndipo pomalizira pake monga mtsogoleri wa NHS England theka la utumiki wa anthu akuluakulu kwa odwala oterowo, Pulofesa Heagerty adatha kugwira ntchito limodzi ndi Prof WHI McLean, ku yunivesite ya Dundee, kufufuza njira zamakono zolepheretsa. gene expression, pogwiritsa ntchito EB model ngati paradigm. Pulofesa Heagerty adasankhidwa kukhala Pulofesa Wolemekezeka wa Dermatology ku The University of Birmingham, ndi magawo mu Institute of Inflammation and Ageing, akugwira ntchito ndi Pulofesa Chris Buckley, Kennedy Pulofesa wa Rheumatology, kuti afufuze kuyambika kwa Psoriasis ndi Psoriatic Arthropathy, komanso Pulofesa Janet. Lord ndi anzake akuwunika mayankho otupa komanso zipsera mu Dystrophic Epidermolysis Bullosa.

Kuyenda ndi mapazi opweteka kapena madera okhuthala a khungu la mapazi nthawi zonse kumapangitsa kuti mapazi asamangidwe bwino pansi, ngakhalenso, kukankhira ndi kutsika kwa mapazi sikudzayimitsidwa mwachizolowezi pamene mukuyenda. Mu epidermolysis bullosa simplex (EBS), ndi matuza mobwerezabwereza ndi makulidwe a khungu pali chizolowezi kuyenda m'mbali mwa mapazi kuyesa kupewa zilonda. Izi zidzatsogolera ku malo osadziwika bwino a akakolo, mawondo ndi chiuno zomwe sizidzakhala zofanana kumanzere ndi kumanja. Pamene anthu akuyenda motere, choncho, chiuno chawo chimayenda mmwamba ndi pansi zomwe zimapangitsa kuti msana ukhale "njoka" ndikuyika kupanikizika kosafunikira pamagulu onse kuchokera kumbuyo kupita pansi.

Grant Mutu: Kusanthula kwa Gait mu EB simplex

Ofufuzawa akuyendetsa kafukufuku woyendetsa odwala a 20 omwe ali ndi EBS kuti afufuze momwe akuyendera pogwiritsa ntchito chipinda cha makompyuta chomwe chingathe kukonza malo olumikizirana, komanso zovuta zomwe zimachitika pamapazi poyenda mu labotale yoyenda. Izi zakonzedwa ndi yunivesite ya Birmingham mu Dipatimenti ya Rehabilitation and Physiotherapy, kumene zotsatira za nkhani zoterezi zingayesedwe. Podiatrists kuchokera ku Solihull adzakhala akuyang'ananso zolakwika pamapazi ndi zovuta zomwe zimagwirizanitsidwa ndi kuyenda kuti ochita kafukufuku apange nsapato zomangidwa mwachizolowezi ndi insoles kuyesa kukonza kusagwirizana kwa kuyenda ndikuwona ngati izi zimathandizira kusokonezeka kwa kayendetsedwe ka kayendetsedwe kake.
Gululi likufuna kupititsa patsogolo chithandizo cha mapazi kuti athandizire kukonza kaimidwe ndikuyenda momwe angathere. Ofufuzawa apeza kuti palinso kukumbukira kwa minofu chifukwa chokhala ndi mavuto kwa zaka zambiri zomwe zidzafunika kuthandizidwa pochita masewera olimbitsa thupi pansi pa chisamaliro cha Pulofesa Falla, Pulofesa wa Rehabilitation ku yunivesite ya Birmingham.
Tikuyembekeza kuti kafukufukuyu adzatsogolera ku chitukuko cha ndondomeko yachipatala ya kusanthula kwa gait mu EB, kutsogolera ku chiwongolero chachipatala ndikuwongolera chithandizo ndi chisamaliro kwa odwala omwe ali ndi EB zomwe zidzawalola kuti aziyenda m'moyo wawo wonse.

EBS imabweretsa matuza a mapazi ndi kukhuthala kwa khungu kumapazi (keratoderma) zomwe zingapangitse kuyenda kowawa kwambiri. Zimakhudzanso kwambiri zomwe anthu omwe ali ndi EBS amatha kuchita tsiku ndi tsiku. Tawona ku chipatala kuti izi zidapangitsanso kupweteka kwa mafupa.

Chifukwa cha izi gulu la kafukufuku wa EB ku Solihull Hospital ndi University of Birmingham, motsogozedwa ndi Prof. Adrian Heagerty, akhala akufufuza momwe Epidermolysis Bullosa Simplex ali nayo panjira yomwe iwo amakhudzidwa ndi EBS akuyenda. Ndife gulu loyamba kufufuza dera ili la EB.

Kupyolera mu kafukufukuyu tapeza kuti anthu omwe ali ndi EBS sapanikizika kwambiri pansi pa mapazi awo poyerekeza ndi anthu opanda EBS akuyenda. Tikuganiza kuti anthu omwe ali ndi EBS adaphunzira kuyenda motere kuti achepetse kupsinjika kumapazi komwe kumatha kuchepetsa matuza. Vuto loyenda motere ndiloti likhoza kukhudza kukhazikika pamene mukuyenda ndipo pakapita nthawi kumakhala ndi zotsatira zoipa pamagulu ena, mphamvu za minofu ndi kuwonjezeka kwa kugwa.

Tikugwiritsa ntchito zotsatira za kafukufukuyu kupanga njira zopewera ndi kukonzanso zomwe tikuyembekeza kuti m'tsogolomu zidzasintha moyo wa anthu omwe ali ndi EBS ndikuwongolera / kuletsa zotsatira za nthawi yayitali, monga kupweteka kwa mafupa. (kuyambira June 2022 Progress Report)

Kafukufuku wathu adawunika momwe anthu omwe ali ndi epidermolysis bullosa simplex (EBS) amayendera poyerekeza ndi anthu opanda EBS. Mwachindunji, tinayang'ana mphamvu zomwe zimagwiritsidwa ntchito ndi mapazi pansi poyenda. Tinkayembekezera kuwona kusiyana kwa momwe anthu omwe ali ndi EBS amayendera popeza nthawi zambiri amakhala ndi matuza opweteka pamapazi awo. Zotsatira za kafukufukuyu zinatsimikizira kuti anthu omwe ali ndi EBS amayenda ndi mphamvu zochepa zomwe zimagwiritsidwa ntchito pansi ndi mapazi awo. Njira zosiyanasiyana zomwe anthu omwe ali ndi EBS amayenda zimatha kusokoneza luso lawo lokhazikika, makamaka poyenda pamalo osakhazikika.

Mu kafukufukuyu tapezanso kuti panali kusiyana kwakukulu pakati pa anthu osiyanasiyana omwe ali ndi EBS. Zina mwa izi zitha kufotokozedwa ndi kukhalapo kwa matuza. Mwachitsanzo, odwala omwe ali ndi matuza panthawi yoyezetsa adawonetsa mphamvu zotsika kwambiri kuchokera kumapazi awo mpaka pansi panthawi yomwe akukankhira akuyenda poyerekeza ndi odwala opanda matuza. Zotsatirazi ndizofunikira chifukwa zikuwonetsa kuti mankhwala osiyanasiyana angathandize kupititsa patsogolo kayendedwe kabwino ka odwala omwe ali ndi EBS.

Tikufuna kupitiriza ntchitoyi kuti tiyese zotsatira za masewera olimbitsa thupi ndi ma orthotics apadera kuti athandize kufalitsa kupanikizika kwa phazi mwa anthu omwe ali ndi EBS chifukwa tikukhulupirira kuti izi zidzathandiza kuti kuyenda kwawo kukhale bwino. (Kuchokera Lipoti Lomaliza la 2022.)