Tafiya tare da EBS (2022)

An kammala wannan binciken a cikin 2022 kuma ya tabbatar da cewa mutanen da ke da EBS suna matsawa ƙasa da ƙarfi da ƙafafu yayin tafiya fiye da mutanen da ba su da blisters. Masu binciken za su so su ci gaba da aikin su don gwada tasirin motsa jiki na ma'auni da takalma na musamman ko insoles (orthotics) don taimakawa wajen yada matsa lamba a cikin tafin ƙafar ƙafa da kuma yin tafiya cikin kwanciyar hankali.

An buga sakamakon a cikin Jaridar Burtaniya ta ilimin likitanci da Jaridar Binciken Dermatology kuma an gabatar da shi azaman fosta ga Society for Investigative Dermatology.

An kammala nazarin matukin jirgi na manya 21 tare da EBS. Ga kowane mutum, matsa lamba a ƙarƙashin ƙafafunsu yayin tafiya an kwatanta shi da wanda ba tare da EB ba amma yana da irin wannan shekaru da jima'i. Sakamakon ya nuna cewa mutanen da ke da EB sun yi tafiya daban-daban, suna sanya ƙasa da matsa lamba a ƙafafunsu lokacin sanya diddige ko turawa daga ƙasa. Mutanen da ke da EB waɗanda ke da blisters a ƙafafunsu sun tura ƙasa tare da ƙarancin matsi fiye da waɗanda ba su da blisters a halin yanzu. Masu binciken sun ba da shawarar cewa wannan salon tafiya na iya taimakawa wajen rage kumburi da zafi amma yana iya sa ya zama da wahala a daidaita yayin tafiya a kan ƙasa marar daidaituwa. Tafiya daban-daban saboda zafin EBS na iya rinjayar ƙarfin tsoka kuma yana ƙara haɗarin ciwon haɗin gwiwa da lalacewa. Masu binciken a yanzu suna haɓaka dabarun ƙoƙarin taimaka wa masu fama da EBS su guji tafiya daban-daban wanda zai taimaka musu su ci gaba da daidaita ma'auni a ƙasa mara kyau da kuma kare haɗin gwiwa da tsokoki.
Sakamakon ya gabatar da sakamakon ga al'umma don binciken da ke tattare da kungiyar tarurrukan dabbobi na shekara-shekara a karshen mako na membobin kungiyar a watan Mayu 2022 ta Dr devecchi:

Deborah Falla, BPHty (Hons), PHD

Farfesa Deborah Falla a cikin Gysar Kimiyyar Kimiyya da Jami'ar Birmingham, UK da kuma darakta cibiyar jin zafi (CPR kashin baya). Binciken nata yana amfani da yanayin fasahar electrophysiological da matakan biomechanical don kimanta motsin ɗan adam da yadda ya shafi ko daidaita shi don mayar da martani ga jihohi daban-daban (misali rauni, gajiya, ilimin cututtuka, horo da zafi). Har ila yau, abubuwan bincikenta sun haɗa da ingantawa na kula da cututtuka na musculoskeletal tare da sha'awar ciwon kashin baya. Ta buga fiye da 190 takardu a cikin kasa da kasa, mujallolin da aka bita, fiye da 300 takardun taro / abstrants ciki har da fiye da 35 da aka gayyata / laccoci mai mahimmanci kuma ta sami lambar yabo da yawa da kyaututtuka don aikinta ciki har da lambar yabo ta Jamusanci a cikin 2014, George J. Davies – James A. Gould Excellence in Clinical Inquiry Award a 2009 da Delsys Prize for Innovation na Electromyography a cikin 2004.

Farfesa Falla marubuci ne / editan littattafai guda uku ciki har da sabon mai suna "Gudanar da cututtuka na wuyansa: hanyar da aka ba da bincike" (Elsevier). Farfesa Falla yana aiki a matsayin Mataimakin Edita don Kimiyyar Musculoskeletal & Kwarewa, Jaridar Electromyography da Kinesiology da IEEE Ma'amaloli akan Tsarin Jijiya da Injiniyan Gyara. Ta kasance Shugabar International Society of Electrophysiology and Kinesiology (ISEK) daga 2016 zuwa 2018.

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

An nada shi a matsayin Mashawarcin Likitan fata a Asibitin Skin Birmingham a cikin 1995, damar ta taso a cikin 1998 don fara sabon sashin kula da fata a asibitin Solihull, wani bangare na Asibitin Birmingham Heartlands kuma yanzu shine Amintacciyar Gidauniyar Zuciya ta Ingila. Farfesa Heagerty yana da alaƙa da ƙungiyar bincike a cikin Epidermolysis Bullosa da Pachyonychia Congenita.

A cikin aikinsa na babban magatakarda, ya iya gano iyalai tare da EB simplex, (EBS) wanda ya haifar da ƙaddarar rashin daidaituwa a cikin EBS. Haɗe tare da aiki a cikin Junctional da Dystrophic nau'ikan EB, kuma daga ƙarshe a matsayin jagora ga NHS Ingila rabin sabis na manya na ƙasa don irin waɗannan marasa lafiya, Farfesa Heagerty ya sami damar yin aiki tare da Farfesa WHI McLean, a Jami'ar Dundee, bincika sabbin fasahohi don hanawa. Maganar kwayoyin halitta, ta amfani da samfurin EB a matsayin misali. An nada Farfesa Heagerty a matsayin Farfesa mai girma Farfesa na Dermatology a Jami'ar Birmingham, tare da zama a Cibiyar Kumburi da tsufa, yana aiki tare da Farfesa Chris Buckley, Kennedy Farfesa na Rheumatology, don gano ƙaddamar da Psoriasis da Psoriatic Arthropathy, kuma tare da Farfesa Janet. Ubangiji da abokan aikinta suna nazarin martanin kumburi da tabo a cikin Dystrophic Epidermolysis Bullosa.

Tafiya tare da ciwon ƙafafu ko wuraren da ke da kauri na fatar ƙafafu koyaushe zai haifar da rashin sanya ƙafafu da kyau a ƙasa, kuma lalle ne, ba za a sanya turawa da saukowa na ƙafafu a cikin hanyar al'ada yayin tafiya ba. A cikin epidermolysis bullosa simplex (EBS), tare da maimaita kumburi da kauri na fata akwai hali na tafiya a gefen ƙafafu don ƙoƙarin guje wa wurare masu ciwo. Wannan zai haifar da matsananciyar matsayi na idon sawu, gwiwoyi da kwatangwalo wanda ba zai zama iri ɗaya a hagu da dama ba. Lokacin da mutane ke tafiya ta wannan hanya, sabili da haka, kwatangwalonsu suna motsawa sama da ƙasa suna haifar da kashin baya zuwa "maciji" da kuma sanya damuwa da ba dole ba a kan dukkanin haɗin gwiwa daga baya zuwa ƙasa.

Taken Grant: Binciken Gait a cikin EB simplex

Masu binciken suna gudanar da binciken matukin jirgi na majinyata 20 da ke dauke da EBS don nazarin hanyar da suke tafiya ta hanyar amfani da na'urar kwamfuta wanda zai iya tsara wuraren haɗin gwiwa, da matsi da ƙafafu yayin tafiya a cikin dakin gwaje-gwaje. An shirya wannan tare da Jami'ar Birmingham a Sashen Gyaran Jiki da Jiki, inda za'a iya auna tasirin irin waɗannan batutuwan ƙafafu. Likitoci daga Solihull kuma za su duba rashin daidaituwa a ƙafafu da matsin lamba da ke tattare da tafiya don baiwa masu binciken damar haɓaka takalmi da aka gina ta al'ada da insoles don ƙoƙarin gyara rashin daidaituwar tafiya da ganin ko hakan yana inganta rashin daidaituwar motsi a cikin gidajen abinci.
Ƙungiyar tana nufin haɓaka goyon baya ga ƙafafu don taimakawa wajen gyara matsayi da tafiya kamar yadda zai yiwu. Masu binciken sun gano cewa akwai kuma wasu abubuwan tunawa da tsokar da suka samu na tsawon shekaru da yawa wadanda za su bukaci a yi musu magani ta hanyar motsa jiki karkashin kulawar Farfesa Falla, farfesa na farfadowa a Jami'ar Birmingham.
Ana fatan cewa wannan binciken zai haifar da haɓaka ka'idar asibiti don nazarin gait a cikin EB, wanda zai haifar da jagorancin aikin asibiti da ingantaccen magani da kula da marasa lafiya tare da EB wanda zai ba su damar ci gaba da motsi a duk rayuwarsu.

EBS yana haifar da kumburin ƙafafu da fata mai kauri akan tafin ƙafafu (keratoderma) wanda zai iya sa ya yi zafi sosai. Hakanan yana da babban tasiri akan ayyukan da mutanen da ke da EBS zasu iya aiwatarwa kowace rana. Mun lura a asibiti cewa wannan kuma ya haifar da ciwon haɗin gwiwa.

Saboda haka kungiyar bincike ta EB a asibitin Solihull da Jami'ar Birmingham, karkashin jagorancin Farfesa Adrian Heagerty, sun gudanar da bincike kan tasirin da Epidermolysis Bullosa Simplex ke da shi a kan hanyar da masu fama da EBS ke tafiya. Mu ne rukuni na farko don bincika wannan yanki na EB.

Ta wannan binciken mun gano cewa mutanen da ke da EBS suna yin ƙarancin matsi a ƙarƙashin ƙafafunsu idan aka kwatanta da mutanen da ba su da EBS yayin tafiya. Muna tsammanin mutanen da ke da EBS sun koyi tafiya ta wannan hanya don rage damuwa a kan tafin ƙafafu wanda hakan na iya rage kumburi. Matsalar tafiya ta wannan hanya ita ce cewa zai iya rinjayar kwanciyar hankali yayin tafiya kuma a cikin dogon lokaci yana da mummunar tasiri akan sauran haɗin gwiwa, ƙarfin tsoka da ƙara haɗarin haɗari.

Muna amfani da sakamakon wannan bincike don haɓaka dabarun rigakafi da gyaran gyare-gyare waɗanda muke fata a nan gaba za su inganta mutanen da ke da EBS' ingantacciyar rayuwa da kuma gyara / hana tasirin dogon lokaci, kamar ciwon haɗin gwiwa. (daga Yuni 2022 Rahoton Ci gaba)

Bincikenmu ya bincika yadda mutanen da ke da epidermolysis bullosa simplex (EBS) ke tafiya idan aka kwatanta da mutanen da ba su da EBS. Musamman, mun bincika sojojin da ƙafafu suka yi amfani da su a ƙasa yayin tafiya. Mun sa ran ganin bambance-bambance a yadda mutanen da ke da EBS ke tafiya tun da yawanci suna da kumburi mai zafi a ƙafafunsu. Sakamakon binciken ya tabbatar da cewa mutanen da ke da EBS suna tafiya tare da ƙananan sojojin da aka shafa a ƙasa da ƙafafu. Hanya daban-daban da mutanen da ke tafiya ta EBS na iya shafar ikonsu na daidaitawa, musamman ma lokacin tafiya akan filaye marasa tsari.

A cikin wannan binciken kuma mun gano cewa akwai babban bambanci tsakanin mutane daban-daban masu fama da EBS. Wasu daga cikin wannan bambance-bambancen za a iya bayyana su ta kasancewar blisters. Alal misali, marasa lafiya da blisters a lokacin gwaji sun nuna mafi ƙasƙanci daga ƙafãfunsu zuwa ƙasa yayin lokacin turawa na tafiya idan aka kwatanta da marasa lafiya ba tare da blisters ba. Waɗannan sakamakon suna da mahimmanci yayin da suke nuna cewa jiyya daban-daban na iya taimakawa wajen haɓaka ingancin tafiya da daidaituwa a cikin marasa lafiya tare da EBS.

Za mu so mu ci gaba da wannan aikin don gwada tasirin motsa jiki na ma'auni da na musamman na orthotics don taimakawa wajen yada matsa lamba a cikin ƙafar mutane tare da EBS kamar yadda muka yi imani cewa wannan zai taimaka wajen inganta yanayin tafiya. (Daga Rahoton Ci gaban Ƙarshe na 2022.)