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A word from your Coordinator…
WelcometothisSpringedi2onoftheDorsetLupusGroupNewsle:er–It’shardtobelieveSpringishere,butseeingtheflowersbeginningtocomeup,bringsushopeforbe:erweather.
Howareyou?HastherebeenanychangesinyourGPsurgery?We’dliketoknowiftheNHSTransforma2onProjectPlansforDorsetareaffec2ngyourarea?Pleasekeepusinformed.
Somegoodnews–TheHamprestonTeasarewellunderwayandhavealreadyraised£253forjusttwoaPernoonsinFebruary.Pleaseseefurtherinthenewsle:erforfuturedatesforthisyear.
ShirleyMerre:andRosemarySmeetonarehopingtore-establishtalkstoourlocalhealthcareprofessionals,HeadOfficehaveequippedthemwith20copiesoftheLupusandDiagnosisbookstohandout.
Whatdoyoudowithyouroldcopyof‘NewsandViews’?WhynotdropitoffatyourlocalGPprac2ce–notonlyisitinforma2vebutitalsoisasimplewayofraisingawarenessofLupus.
IwishyouallasuperSpringandSummerandlookforwardtoseeingyouatanevent.WeareofftoNewYorkCityinSeptemberandI’mhopingtomeetupwiththeNYClocallupusgroup….ImayhavesomenewstoreportintheAutumn.RememberIamalwaysheretohelpinanywayIcan.Keepwell.
Helen xx
Lupus UK Reg Charity No. 1051610 National Office: St James House, Eastern Road, Romford, Essex RM1 3NH
Tel: 01708 731251 Fax: 01708 731252 �1
Regional Co-ordinators
Helen Bifield
01202 696299
[email protected]
Rose Smeeton
01305 761454
[email protected]
Shirley Merrett
[email protected]
Contacts
Helen B 01202 696299
Tamsin W 01202 041149
Jean Durrant 01258 860565
Rose S 01305 761454
Patrons
Dr Neil Hopkinson DM FRCP
Christopher Chope OBE MP & Christo Chope
DORSET LUPUS GROUP NEWSLETTER
check out our website ~ join our Facebook page and get involved
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Report from National Council Meeting - Helen Bifield
ThiswasmythirdNa2onalCouncilmee2nginLondon,heldattheGrangeCityHotelonMarch11th.
Therewere19membersatthemee2ngwhichconsistedofCEOChrisMakerandPaulHowardfromHeadOffice,KevinWestonChairman,TinaStempTreasurer,DavidHopkinsSecretary,YvonneNortonandJanRobertsTrustees,LizValeCo-Optedtrusteeandrepresenta2vesfromDevonandCornwall,Hampshire,East,WestandSouthLondon,SouthandEastScotland,EastMidlands,Strathclyde,WestMidlands,North
WalesandusDorset😊 .
Itwasagooddaywithalotdiscussed,somediscouragingreportsoflackofa:endanceateventswerenotedfromseveralCoun2esbutfrommostthereisalotofposi2vework,supportandfundraisingbeingdonebyLupusmembersandtheirfamiliesacrossBritain.
Therearetobechangesinthewaytheboardoftrusteesareformed–currentlytheboardismadeupof8Lupusmembersandgroupchairpersonswith1co-optedperson.FromMay6th2017attheAGMinWinchester,anewplanwillbeadopted-therewillbeamaximumof8Lupusmemberswithanaddi2onal2furthertrusteeswithspecialistskills(thesecouldbeConsultants,GP,medicalprofessionalsetc)these10peoplewillservefora3yearperiod.Inaddi2ontherewillbe2Co-optedtrusteesfor‘specificpurposes’whowillservefora1yearperiod.Theideaistoopenupthetrusteecommi:eetobe:erdealwithallaspectsofLupusUK.
HeadOfficeconfirmedtheyhaveagreedagrantof£246kforaSpecialistLupusNurseBand6(5yearperiod)atQueenElizabethHospital,Birmingham.
YvonneNortonislookingtostanddownfromrepresen2ngLupusUKatLupusEurope.
Thedayfinishedwiththanksfromthetrusteestoallcoordinatorsandchairsfortheirhardwork.
NGS Manor Farm at Hampreston
NGS Manor Farm Teas Fundraiser, Hampreston
LupusGroupmembersservetheteasandcakesandthefundsfromtherefreshmentsgotothe
workofLupusUK.Ifyouwouldliketohelp,pleasecontactDebbie
Steel01202877390
Sunday11June 1-5pm
Sunday30July 1-5pm
Wednesday3August 1-5pm
Sunday13August 1-5pm
Lupus UK Reg Charity No. 1051610 National Office: St James House, Eastern Road, Romford, Essex RM1 3NH
Tel: 01708 731251 Fax: 01708 731252 �2
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‘Boutique In a Bus’ Fundraiser - Saturday 27th May 2-4.30pm
ChrisMcKennahasorganisedthisfundraiserinPuddletown,Dorchester.
Thebusisfilledwithlot'soflovelyclothes,bagsandaccessoriesforwomen.Allitemsonthebusarepricedunder£50.
TherewillbeTea/Coffeeandcakesontheday&araffle.AllareWelcome.
Thebuswillbeat:2KindleCoHage,TheOldCoalyard,StylesLane,Puddletown,NrDorchester,DT28SJ
Lupus UK Reg Charity No. 1051610 National Office: St James House, Eastern Road, Romford, Essex RM1 3NH
Tel: 01708 731251 Fax: 01708 731252 �3
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Do’s & Don’ts of Living with Sjögren’s and Raynaud’s
Twooverlappingcondi2onsknowntomanywithLupusareSjögren’ssyndromeandRaynaud’sdisease,alsoknownasRaynaudsphenomenon.Herearesomeoftheprac2caldo’sanddon'tstolivingwiththesediseases.
Sjögren’ssyndromeaffectsthebody’sabilitytoproducemoistureintheglandsoftheeyes,nose,mouthandvagina.Althoughthehallmarksymptomsaredryeyesandmouth.Sjögren’smayalsocausedysfunc2onofotherorganssuchasthekidneys,gastrointes2nalsystem,bloodvessels,lungs,liver,pancreasandthecentralnervoussystem.Pa2entsmayalsoexperienceextremefa2gueandjointpainandhaveahigherriskofdevelopinglymphoma.Sjögren’ssyndromeisclassifiedasprimarywhenitoccursalone,orsecondarywhenanotherconnec2ve2ssuediseaseispresent.Prescrip2onmedicinesfordryeyesandmouthareavailable,asarevariousoverthecounterlubrica2ngproducts.
• Dokeephighhumidityworkandhomeenvironments
• Dobreathethroughyournosenotyourmouth
• Dobeawarethatmanyprescribedmedica2onscausedrymouth(xerostomia)
• Dopayclosea:en2ontothehealthofyourteethandgums
• Don'tconsumespicyfoodsoracidicjuices,fruitsorvegetableswhichcanirritatemouth2ssue
• Don’teathardcrunchyfoodsthatcanirritateortearmouth2ssue
• Don’tsmokeorspend2meinloca2onswhereothersaresmoking
• Don’tusetartar-controltoothpasteorteethwhiteningproducts,whichcanirritatemouth2ssue
• Don’toverusealcohol(includingwine)ormouthwashesthatcontainalcohol,asthesecandrythemouthfurther
Raynauds’sdiseasecausesnarrowingofthebloodvessels,whichmostcommonlyaffectsthefingersandtoes.Whenbloodcan’tgettothesurfaceoftheskin,theaffectedareasturnwhiteandblue.Whenthebloodflowreturns,theskinturnsredandthrobsor2ngles.Inseverecases,lossofbloodflowcancausesoresor2ssuedeath.Prescrip2onmedicinescanhelpkeepthebloodvesselsopen,butthebesttreatmentistoavoidthecauseofthea:acks.
• Doavoidabruptchangesintemperature,especiallygoingfromwarmairtoaircondi2oning
• Dosoakyourhandsorfeetinwarmwateratthefirstsignsofana:ack
• Dousemi:enswhentakinganythingoutofthefreezer
Lupus UK Reg Charity No. 1051610 National Office: St James House, Eastern Road, Romford, Essex RM1 3NH
Tel: 01708 731251 Fax: 01708 731252 �4
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• Doavoidexcessstress
• Doseeyourdoctorifyoursymptomsbecomeworseorifyouno2ceanysoresonyourfingersortoes
• Don’tsmokeorspend2meinloca2onswhereothersaresmoking
• Don’tusevibra2ngtools,suchasanelectrichandmixerorpowertools
• Don’tgooutsideincoldweatherwithoutacoat,hat,warmsocksandmi:ens(notgloveswhichallowmorecoldairtogetbetweenthefingers)
Source:LupusFounda2onofAmericaLupusNowMagazine(www.lupus.org)
Lupus Events in Hampshire
Hampshire Lupus Information Day Saturday 6 May 1:30pm
At The Guildhall Winchester SO23 9GH
Talks by
Professor Chris Edwards Consultant in Rheumatology – Southampton
Dr Neil Buchanan, Consultant in Rheumatology – Royal County Hospital, Winchester
Colin Beaver – Matron for Rheumatology, Portsmouth
Carol Brumpton, Lupus Nurse Specialist – Christchurch Hospital
For further details and to book a free ticket email : [email protected] or phone Paul Howard on 01708 731251
-----------------------------------------------------------------------
It would be lovely if we could support Carol our Specialist Nurse from Christchurch by attending this event.
Lupus UK Reg Charity No. 1051610 National Office: St James House, Eastern Road, Romford, Essex RM1 3NH
Tel: 01708 731251 Fax: 01708 731252 �5
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Update from the team at Christchurch Rheumatology
WearedelightedtoreportthattheimprovementstotheChristchurchHospitalsitearecon2nuingatpace,withthelovelynewrecep2onareaopeninganyday.Whiletherewills2llbesomeongoingimprovementstocome,theout-pa2entrefurbishmentisnowcomplete,withabrandnewX-rayDepartmentandredevelopedwai2ngarea.
ThesedevelopmentsandchangesreflecttheongoingcommitmentoftheRoyalBournemouthandChristchurchHospitalsNHSFounda2onTrusttoworkinpartnershipwithpa2entsandinvestinthefutureofhealthcareinDorset.
Undoubtedly,localNHSserviceswillcon2nuetogothroughaperiodofchangeasservicesareredesignedtomeettheneedsofthelocalpopula2on.However,ourfocusisourabsolutecommitmenttodeliveringhighqualitycareforourpa2entsandwearealwayskeentohearourpa2ents’viewsandworkcloselywiththemtomakeserviceimprovements.
AlthoughwelookaPeradultpa2entswithLupusofallagesandgenders,IthoughtIwouldtaketheopportunitytodiscussthelatestEuropeanguidelinesforwomen’shealthpublishedbytheEuropeanLeagueAgainstRheuma2sm(EULAR)inMarch2017and,inpar2cular,howtheyrelatetopregnancyplanning.
Thesenewguidelinesarecomprehensiveandhavebeendevelopedusinganevidencebasedapproach.
AtChristchurchweplacegreatemphasisondiscussingfamilyplanningandensuringourpa2entshaveaccesstoinforma2onpriortoconcep2on.Thisemphasisonhighqualitycarecon2nuesthroughoutpregnancyandaPerdelivery.
Encouragingly,theguidelinessaythatmostwomencanhavesuccessfulpregnancies,butencouragesclinicianstopromotethehealthofmumandbaby.Concernscentreonthepoten2alimpactofanypregnancyonmaternaldisease,theeffectofLupusdiseaseac2vityontheunbornbabyandthesafetyofmedicinesduringpregnancyandbreastfeeding.
Duringpregnancy,womenwithLupusshouldhaveextramonitoringintheformofanindividualisedplanmadebytheObstetricTeam.LUPUSUKhasanexcellentguidetopregnancythatpa2entsmayalsofindusefulontheirwebsitewww.lupusuk.org.uk.
Wewouldencourageyoutodiscussyourchoicesregardingcontracep2onandanyfuturepregnancyplanswithyourclinicianwhereverpossible.
Weareplanninganinterac2vemorninglaterintheyearandwilldiscussfurtherissuesofinterestforallourpa2entswiththeusualinformallectureandques2onandanswerformat.
Wehopethatyouwillbeabletojoinusforthiseventandwewillprovidefurtherdetailsassoonaspossible.
CarolBrumpton-LupusNurseSpecialist
Lupus UK Reg Charity No. 1051610 National Office: St James House, Eastern Road, Romford, Essex RM1 3NH
Tel: 01708 731251 Fax: 01708 731252 �6
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Medic Alert
MedicalAlertBandstailoredtoyourcondi2onandmedica2onarenowinaffordableformspricesstar2ngfrom£1.95
h:p://www.theidbandco.com/Rubber-Medical-Bracelets
TheIDBandCompanyLimited Unit9OakDrive
LionheartEnterpriseParkAlnwickNE662EU
UnitedKingdom
Tel:08009993669
Foot Care - Shirley Merritt
Followingresearchundertakentolookatproblemslupussuffersexperiencewiththeirfeet,itis
becomingmorerou2netobeofferedreferraltochiropodist/podiatrist.
Thishasbeenveryhelpfulforme,havingbeenreferredbythespecialistnurse.Thewaittobeseenwasnotlongandthetreatmentandadvicereceivedasaresulthasbeenbeneficialbothtomyfootcomfort
andavoidanceoffurtherinfec2on.Myselfandotherslocallytookpartinresearchtodeterminetheeffectsof
lupusonthefeet.Thisisagreatexampleofhowresearchcanhaveaposi2veoutcometoimprovethepa2entcareoffered.
Calling all Ebay Sellers!
£ DoyousellonEBAY?£
LupusUKhaveasitetobuyorsellyouritemswhereapercentageoftheproceedscanbedonatedtotheworkofLupusUK–copythelinks
h:p://www.lupusuk.org.uk/sell-for-lupus-uk-on-ebay/
h:p://www.ebay.co.uk/egw/ebay-for-charity/charity-profile/?np_id=193747
Lupus UK Reg Charity No. 1051610 National Office: St James House, Eastern Road, Romford, Essex RM1 3NH
Tel: 01708 731251 Fax: 01708 731252 �7
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May 10th is World Lupus Day
Thereisnoboundarytotheimpactoflupus.Lupusisaglobalhealthproblemthataffectspeopleofallna2onali2es,races,ethnici2es,gendersandages.Lupuscanaffectanypartofthebodyinanywayatany2me,oPenwithunpredictableandlife-changingresults.Whilelupusknowsnoboundaries,knowingallyoucanaboutlupuscanhelpcontrolitsimpact.
About World Lupus DayWorldLupusDayissponsoredbytheWorldLupusFedera2on,acoali2onoflupuspa2entorganisa2onsfromaroundtheworld,unitedtoimprovethequalityoflifeforpeopleaffectedbylupus.Throughcoordinatedeffortsofitsglobalaffiliates,theWorldLupusFedera2onworkstocreategreaterawarenessandunderstandingoflupus,provideeduca2onandservicestopeoplelivingwiththedisease,andadvocateontheirbehalf.Learnmoreatworldlupusfedera2on.org. WorldLupusDayservestocalla:en2ontotheimpactthatlupushasonpeoplearoundtheworld.Theannualobservancefocusesontheneedforimprovedpa2enthealthcareservices,increasedresearchintothecausesofandcureforlupus,earlierdiagnosisandtreatmentoflupus,andbe:erepidemiologicaldataonlupusglobally.WorldLupusDayservestorallylupusorganisa2onsandpeopleaffectedbythediseasearoundtheworldforacommonpurposeofbringinggreatera:en2onandresourcestoeffortstoendthesufferingcausedbythisdisablingandpoten2allyfatalautoimmunedisease.
About World Lupus Day and DorsetEveryyearwetrytohaveaLupusInforma2onStandinacoupleoftheDorsethospitalsonMay10–thisyearweareplanningtobeatDorchesterCountyHospitalandBournemouthGeneralHospital.
Ifyouareabletohelponthatday–pleasecontactHelenBifield01202696299(forBournmeouth)orRosemarySmeeton01305761454(forDorchester)Manythanks.
Dates for your diary - cut off and stick on your fridge
SatApril1st-CoffeeMorningatHaskinsGardenCentre,NrFerndownBH229DG-11-12.30pm
SatMay6th-HampshireLupusInforma2onDayatTheguildhall,Winchester1.30pm
WedMay10th-StandsatBournemouthHospital&DorchesterHospital-10-3pm
SatMay27th-Bou2queinaBusat2KindleCo:age,Puddletown,NrDorchester,DT28SJ-2-4.30pm
SunJune11th-ManorFarmOpenGardens-Hampreston-1-5pm
SatJune24th-CoffeeMorningatHaskinsGardenCentre,NrFerndownBH229DG-11-12.30pm
SunJuly30th-ManorFarmOpenGardens-Hampreston-1-5pm
Wed3rdAug-ManorFarmOpenGardens-Hampreston-1-5pm
SunAug13th-ManorFarmOpenGardens-Hampreston-1-5pmLupus UK Reg Charity No. 1051610 National Office: St James House, Eastern Road, Romford, Essex RM1 3NH
Tel: 01708 731251 Fax: 01708 731252 �8
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Lupus UK Reg Charity No. 1051610 National Office: St James House, Eastern Road, Romford, Essex RM1 3NH
Tel: 01708 731251 Fax: 01708 731252 �9