Anexplorationoflife,death, andbereavementthrough communityexperiences
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InMemoryofaLovedone: Vinnie’sBall,Page13-14 ReflectionsonGrief,Page9-10
Navigatinglifewithalife-limiting condition:acelebrationoflife, Page15-16
As a parent to a child with a rare disease I have a strong visceral reaction to reading the words ‘dying well’ as it relates to living with a rare disease. Part of me doesn’t want to see it, hear it or talk about it; perhaps you feel the same. But death and dying are partofallourlivesandformanyinourIMDcommunity the death of a loved one, or their own death, is an imminent or lived reality. We share here beautiful Clara’s story and the love, compassion and determination of her family - even in the midst of unimaginableloss-tostillhelpotherswithanIMD.Our founders talk about navigating family life with a lifelimiting inherited metabolic disorder and how to celebratelife,andwesharethoughtsongrieffromour wonderfulHelenamongstothers.
MSUKarehereforpeoplefacingtheir,oralovedone’s, death and for bereaved families. We are here for your whole life journey and I’m proud to say that we still have friendships and donations from families who havelostsomeonetoanIMD,evenmanyyearsago.
Wearestillandalwayswillbeyourcommunity.
KirstyHoyle CEO
Anintroductiontothismonth’smagazineandwhy wearetalkingaboutdeathandgrief
Weareproud,andhonoured,atMetabolicSupportUKtobehereforanyoneaffectedby aninheritedmetabolicdisorderthroughouttheentiretyoftheirlife,andIMDjourney. Withover500differentinheritedmetabolicconditions,thereisavastrangeofcondition groups,symptoms,prevalence,care,andprognosesacrossthoseinourcommunity.
Andyet,acrossdifferentpresentationsofthesameIMD, acrossconditiongroups,andacrosstheIMDcommunity asawhole,therearecommonalitiesthatthreadthrough thecommunityandbindus.
Onlinecommunitiesandfriendshipsareincredibly powerful,theyhelpbridgethegeographicaldistance helpingmanyopenlyandhonestlydiscussaspectsof theirdailylife.Theyhelpdemonstratemorethanever: individuallyrare,collectivelycommon.
TheIMDcommunityarenostrangerstonuancedanddifficultconversations.Andwhilst someconversationscanfeeluncomfortable,itdoesn’tmeanweshouldn'thavethem. Forsome,thisisperhapsmosttrueforsomethingweashumanityallhaveincommon; deathandbereavement.
WeareworkingtohelptheIMDcommunitylivewell,today,whateverthatlookslikefor them.Andsometimesthatincludesdyingwell.Thedeathofalovedone,orplanning yourownendoflifecare,mayalwaysbedifficult.Butwecanalleviatesomeofthose difficultiesbyhelpingtoremovethetabooarounddeathandfosteringconversations andconnection.
Inthisedition,wewillexploresomeaspectsofgrief,bereavement,andcelebratinglife. Ourfeaturehighlightsthechallengesfacedbythosewiththeultra-rarecondition Galactosialidosisandthesupportavailabletothem,whilstsomefamiliessharethe differentwaystheyremembertheirlovedones,includingMSUKfounders,Lesleyand PeterGreene.
AnintroductiontoGalactosialidosis,anultra rareGlycoproteinDisorder
Galactosialidosisisarareglycoproteinstoragediseasecausedbyachangeinthe CTSAgene.
Butwhatdoesthismean?
TheCTSAgeneprovidesinstructionstoproduceanenzymecalled cathepsinAinourbodies.Workingalongsidetwootherenzymes, cathepsinAbreaksdowncertainsugars,proteins,andfatswithin lysosomes.Lysosomeshavearangeofimportantfunctionsfrom breakingdownworn-outcellstohelpingprotectourbodiesfrom virusesandbacteria.
ThechangetotheCTSAgenemeanssomeonewithgalactosialidosisdoesn’t produceenoughcathepsinA,whichleadstoabuild-upofcertainsubstanceswithin thelysosomesincludingglycoproteinsandglycolipids.Inturn,thisaccumulation canaffectmultipleorgansandtissuesinthebody,resultinginawiderangeof symptomsacrossthreedifferentformsofgalactosialidosis.
Thosewiththeearly infantileformareusually diagnosedbetweenbirth and3monthsold.Infants withthisformusuallylive intolateinfancy.
Symptomsmayinclude: extensiveswelling,asoft outpouchinginthelower abdomen,anenlarged liverorspleen,abnormal bonedevelopment, enlargedheart,kidney disease,eyeabnormality, distinctivefacialfeatures.
Thosewithlateinfantile formusuallydevelop symptomswithinthefirst yearoftheirlife.Life expectancycanvary dependingontheseverity ofsymptoms
Symptomsmayinclude: Shortstature,heartvalve problems,hearingloss, eyeabnormality, intellectualdisability, distinctivefacialfeatures.
Theageatwhich symptomsofthisform begintodevelopcan vary,buttheaverageis16 yearsold.Thosewiththis formusuallyhavea normallifeexpectancy.
Symptomsmayinclude: Ataxiaandmuscle twitches,seizures,vision andhearingloss,eye abnormality, abnormalitiesinthe bonesofthespine,dark redspotsontheskin, progressiveintellectual disability,distinctive facialfeatures.
AnintroductiontoGalactosialidosis,anultra rareGlycoproteinDisorder
Galactosialidosisisdiagnosedthroughacombinationofclinicalevaluation,genetic testing,andenzymeactivityassayswhichmeasuretheactivityofyourenzymes.The prevalenceiscurrentlyunknownbutmorethan100instancesofgalactosialidosis have beenreportedsofar.Anestimated60%ofpeoplewiththeconditionhavethe juvenile/adultform;mostofwhichareofJapanesedescent.
Thereisnotreatmentforgalactosialidosisatthemoment.Instead,careis focusedontreatingthespecificsymptomsoftheindividual,suchas takingmedicationstocontrolseizures,tohelpimprovequalityoflife.
Lifeexpectancycurrentlyvariesbetween,andwithin,thethreeforms.
TheGeneticsofGalactosialidosis
Galactosialidosisisaninheritedautosomal recessivecondition.
ThismeansthechangedCTSAgenemustbe inheritedfrombothparentsforthechildtobe affectedbygalactosialidosis.
Ifbothparentsarecarriersof galactosialidosis(andsohaveonechanged CTSAgenethemselves)there’s:
50%chancethechildwillalsobeacarrier, 25%theywillhavetwoworkinggenesand beunaffected,and 25%ofdevelopinggalactosialidosis.
ThisinformationiseditedfromtheTEMPLEGuideswhichhavebeenadaptedbytheDietitiansGroupoftheBritishInheritedMetabolic DiseaseGroup(BIMDG)andisbasedontheoriginalTEMPLEwrittenbyBurgardandWendel TheTEMPLEGuidesaresupportedbyNutricia
Whilstthereisnocurrenttreatment,TheGalactosialidosisNetworkare
ÇağdaşandCinarCanbolatwelcomed theirbeautifulbabygirlClaraLorinonthe 30thofJune2021.
At17monthsold,Clarawasdiagnosedwith theultra-rareinheritedmetaboliccondition, galactosialidosis.
Followingherdiagnosis,Clarabattledchronic kidneydiseaseandnarrowlysurvivedaheart attackwhereherheartstoppedforeleven minutes.Sherecoveredwellbutbecame reliantondialysisfourormoredaysaweek whilstsheawaitedakidneytransplant.
Clarawasn’ttheonlyonefighting.Herfamily turnedtheirimmenseeffortsandcaretowards supportingtheirdaughterandotherswiththe ultra-rarecondition.Herfatherjoinedthe boardofISMRD(theInternationalSocietyfor Mannosidosis&RelatedDisease)toensure internationalcollaborationandtheyfounded theGalactosialidosisNetwork;bringing togetherthoseaffectedbythecondition, compilinginformationandresearch,and lobbyingforchange,development,anda spotlightontheconditionthatchangedtheir lives.
ClarapassedawayonMarch6th,2024,atjust twoandahalfyearsold.Shewillliveoninher family’smemoryandtheircontinuedsupport forthegalactosialidosiscommunity.We,too, arehonouredtobeapartofClara’smemory.
ThankyoutoClara’sfamily,friends,and communityfortheirdonationstousin Clara’snameandmemory.Togetherthey raisedover£24,500(inclusiveofgiftaid).
MeetTheInternationalAdvocateforGlycoprotein StorageDiseasesinthisarticlefromtheirpresident
Doyouorafamilymemberhaveoneofthefollowing?
Alpha-Mannosidosis Aspartylglucosaminuria(AGU)
Beta-Mannosidosis
Fucosidosis
Galactosialidosis
Sialidosis
SchindlerDisease
Pleasecontactusatinfo@ismrd.org.Weoffersupport,informationandconnectionwithother similarlyaffectedfamilies.Wealsoworkforresearchandtreatmentsforeachofthesediseases.
TheInternationalSocietyforMannosidosisandRelatedDiseases(ISMRD)istheInternational AdvocateforGlycoproteinStorageDiseasesgovernedbyaBoardofDirectorswhoarefamily membersfromaroundtheworldandaProfessionalAdvisoryBoardwhoaremembersofthe internationalscientificandmedicalcommunity.ISMRDhasbeenoperatingfor25yearsand membershipisfree.
OurMission
Throughpartnershipsbuiltwithmedicine, scienceandindustry,weseektodetect andcurethesediseases,andtoprovidea globalnetworkofsupportandinformation.
OurVision
Weseekafutureinwhichchildrenwith GlycoproteinStorageDiseasescanbe detectedearly,treatedeffectively,andgo ontolivelong,healthyandproductivelives.
ISMRDisassistingwiththedisseminationofLamzede,anon-centralnervoussystemenzyme replacementtherapyforAlpha-Mannosidosisadultsandchildren,thatwasapprovedforuse intheUSin2023.WearealsoworkingontreatmentsforBeta-Mannosidosis,Fucosidosisand Galactosialidosis,andfundingresearchintoAlpha-MannosidosisandMucolipidosis.
ISMRDhasprovidedpatienttestimonythathasresultedinapprovalforuseofpreimplantation genetictestingformonogenicdisorders(PGT-M)intheUK,forbothSialidosisandFucosidosis. ThismeansthatSialidosisandFucosidosisfamiliesintheUKcanhaveadditionalchildren withoutfearofthembeingaffected.Wehaveheldsixinternational conferencesandwillbeholdingour7thInternationalFamilyand ScientificConference7-10August2025inMinneapolis,Minnesota,USA. Withwarmregards, CarolynPaisley-Dew, ISMRDPresident
Helen,ourSupport&AdviceLeadreflectson recenttrainingandher20yearsofexperience supportingtheIMDCommunity
Firstthingsfirst;griefisneverlinear.Everyindividualhastheirownuniquewayofhandling thedeathofalovedone.Thismayinpartbeinfluencedbybeliefs,traditionsandcultures, thesupportnetworkandresponseofthepeoplearoundthem,familydynamics,andof coursethecircumstancesaroundthedeathtoo.Thedeathmayhavecomeasashock, occurringsuddenlyoritmayhavecomeattheendofalongillness,forexample.
Therearemanyfeelingsassociatedwith bereavement:
LivingwithGrief
Theterm‘closure’isonethatwas historicallyusedtodescribetheprocess ofacceptanceafterthedeathofaloved onebutisnowdeemedasunhelpfuland shouldbeavoidedlargelybecausegrief isn’tsomethingwe‘getover’or‘moveon’ from,insteadthefeelingsbecomeeasier tomanageandourlivesadjustaroundit.
The‘Tonkinmodelofgrief’(affectionately called‘thefriedeggmodel’)showsthis perfectly.
Thegreyshaperepresentsgriefandhow muchofyourlifeitmaybeseenas consuming,withhowmuchofthepinkit covers.
Allofthesefeelingsarenormaland sometimestheyconflictwitheachother too.That’sokay.Youcanneverpredict howyouwillfeel,andit’simportantto rememberthesefeelingswilloften changeandfluctuate.
Whensomeonewelovediesitisnatural toseektomaintainalastingconnection withthatpersonasourownlifeadjusts overtime,andthistoocanchange.
You’llseethatgriefremainsthesamesize andthatourlivesadaptarounditover time.Thismayfluctuatetoo,recognising thatsomedaysmaybemoredifficult thanothers.
Thesizeofthegriefshouldn’tbeseenasa badthingeither,it’sasignofloveand howimportantthatpersonwillcontinue tobeinyourlife-infactweknowthat buildingenduringconnectionswithour lovedonehelpstobuildresilience.
Ifthereisachildinthefamily,perhapsa siblingorotherrelativetothepersonthat haspassedaway,itcansometimesfeel difficulttoknowhowtosupportthem.
Childrenoftenprocessgriefmuch differentlythanadultsdoandtheir emotionsmayfluctuatebetweensadness todoingthingsthatmakethemhappy. TheChildBereavementTrustcallthis ‘PuddleJumping’anditisbeautifully describedintheirshortvideo:
Talkingtochildrenaboutdeathcanseem unworldly.Asadults,wegenerallyfeel thatchildhoodshouldbeahappytime, growingandexploring,andthatthey shouldperhapsbeprotectedfromdifficult conversations.
Childrenusuallyknowmorethanadults thinktheydo,theypickuponwhat’s goingonaroundthemandtheytoo experiencevaryingemotionsaround deathandpotentiallythechanged dynamicsofthefamily.
Childrenwhoaskquestionsareusually abletocopewithinformationifitisgiven tothemappropriatelyandhonestly.Like usasadults,weshouldgivethemthe permissionandsupporttohelpthem expresstheirfeelingsandemotionsas wellassupportingthemtocreatelasting connectionstoo.
Creatinglastingconnections,whetheritisforourselvesorchildren,issomethingthatis individualandunique.Someideastosupportwiththisare:creatingorvisitingaplacethat remindsyouofthem,creatingmemoryboxesorhavingcustomcushionsorbearsmade fromanoutfittheywore.However,themostimportantlastingconnectionismemoriesand thesharingofthesewiththepeoplearoundyou,talkingaboutthethingsthatstillmakeyou laughandsmilearereallyimportantforresiliencebutalsocomfortingtoo.
HearsomeofthedifferentwaysMSUKarehere foryouduringdifficulttimes
Itcanbedifficulttoreachoutforsupportfollowingthelossofalovedone. Itcanbecommonforfamilyandfriendstogrieveindifferentways,oronly haveenergyandspacefortheirowngrief,leavingeachofyoufeelingalone.
Ourbereavementsupportresourcesarehereasagentleaidwhenyouarenotsure wheretoturn.Whetheryou’relookingforpracticaladviceaboutstepsthatneedtobe takentoregisteradeathorhelpwithfuneralcosts,towhatmayhappennext,learningto dealwithyourlossovertheyears,orjustfeelinglost,ourresourcesoffersomeguidance.
Thereisnotimeframeattachedtowhenyou can,orshould,talkaboutlossandtheteamat MetabolicSupportUKarealwaysheretolisten toyou.
MuchlikemanyaspectsoflifewithanIMD,sometimesitcanhelptohearfromotherswho haveexperiencedthesameasyouandcanperhapsunderstandhowyoumaybefeeling betterthanothers.Youcanreadstoriesonourwebsitetohearfromotherswhohavelost lovedones,suchas;
AbduallahwasdiagnosedwithMolybdenum CofactorDeficiencyTypeA(MoCDA)when hewasjustseveraldaysold.Hismum, Sabiha,sharedherson’sstoryandher continuedjourneyoflearning,connection, andsupportthroughouthislifeanddeath. Sabihalearntsomuchfromherson,andwe aregratefultohersharingtheirstoryinsuch anhonestandopenwaysootherscanlearn fromAbdullahtoo.
“Mysondidn’twantanyonetofeelsorryfor him.Hewasthesweetest,mostgenuine exampleofpositivedeterminationyou couldimagine.”
Sharingthestoryofyourlovedonecanbe a meaningful way to remember and celebrate them. If you would like to share any stories with us please get in touch withToniattoni@metabolicsupportuk.org. ReadSabihaandAbdullah’sfullstoryhere.
Someofthedifferentwaysyoucaninclude MSUKinyourlovedone’slegacy
Therearecountlesswaystorememberandhonourourlovedones.Findingsomethingthat feelsrightforyouisthemostimportantthingandwearegratefulforthosewhochooseto includeusintheirlovedones’legacies.
FundraisinganddonatingtoMetabolicSupportUKinmemoryofyourlovedoneisjustone waytocontinuetheirstorywhilstsupportingothersaffectedbyinheritedmetabolic disorders.
Ifyou’vebeenwithusforsomeyears,you mayrememberourGalaxyTributeFunds.
Thesefundswereoftenusedasawayfor familyandfriendstodonateinaloved one’smemoryoverasetperiodand raisingdifferentmonetarymilestones wouldseearose,star,tree,andbench dedicatedtothepersonremembered. Thisallowedyoutoseetheamountyou hadraisedandthepowerfulimpactyour donationsandlovehaveonsupporting ourworkandtheinheritedmetabolic disordercommunity.
We’reintheprocessofupdatingourinmemorygivingtomakeiteasierforyou, andus,tohonouryourlovedonesthrough donationsandfundraising.Thankyoufor yourpatiencewhilstweworkthroughthis, itisimportanttousthatwehandlethese changeswiththeutmostrespectand care.
Whilstthesechangesarebeing implementedyoucanstilldonatein memoryofalovedoneasbefore,whether thisistowardsaGalaxyFund,aone-offor regulardonationgiveninmemory,or throughsomeheartfeltfundraisinglike Vinnie’sfamily.
VinnielivedwithMetachromatic Leukodystrophy(MLD)andsadlypassed awayin2016atsixyearsold.
Knowntohisfamilyandfriendsasa “speciallittleboywhowasalwayssmiling andlaughing”,theyhavefounda wonderfulwaytocometogetherto rememberVinniewhilstraisingfundsto causesclosetotheirhearts.
MLDisaninheritedmetabolicdisorder thatcausesfattysubstancestobuildup incells,particularlyinthenervoussystem. Thiscancauseseizures,developmental regression,andlossofmotorfunctionor senses.
EarlierthisyearVinnie’sfamilyandfriends heldtheirsecondVinnie’sBall,acharityball inVinnie’smemory.
Vinnie’saunt,Louise,sharedthisyear,“Itwas alovelyevent,lotsofmemoriesshared,and newonesmade.”
Together,overthenighttheyraisedan amazing£5,691.96tosplitbetweenEast Anglia’sChildren’sHospitalandMetabolic SupportUK.Thisaddstothe£10,000they raisedduringtheirfirsteventlastyear.
Vinnie’sballlookedlikeafantasticeventfull oflove,andwearehonouredtobeapartof itandVinnie’smemory.
Thankyoutoanyonethinking ofusandothersaffectedby inheritedmetabolicdisorders duringdifficulttimes.
It’simportanttorememberthatthereisno rightwaytogrieveorrememberourloved ones.
Thejourneyofdeath,loss,andbereavement canlookdifferentforeveryoneandinyour owntimeyoucanstarttorememberyour lovedoneinwaysthatcomfortyou.
HearfromthefoundersofMSUKandtheir family’sjourneyoflifewithalife-limitingIMD
MSUKisJenniferGreene’slegacy,duringherlifeshesupportedandchampionedthecharity establishedbyherparentsfollowingherdiagnosisofcystinosis.TheGreenefamilyhave ensuredthat,throughsettingupandsupportingthecharity,peoplethroughouttheyears havehadsomewheretoturnwhilstnavigatingtheirjourneywithanyrareinheritedmetabolic disorder.Sadly,Jenniferpassedawayin2007attheageof28.
Jen’sfamilyhavesharedtheirthoughtsandexperienceswithus.
WrittenbyJen’sFamily
Jenwasdiagnosedwithalifelimiting conditionat18monthsoldbutshepassed awayasanadult,soweweremade awareofherprognosiswhenshewasan infant.
However,itshouldbepointedoutthatthis diagnosiswasmadeover40yearsago andthankfullyadvancesintreatmentand dailymanagementofthecondition,while stillongoing,haveconsiderablyimproved theoutlookforthosediagnosedmore recently.
Forus,waybackin1980,the bereavementprocessbeganwithJen’s diagnosisbecauseweknewthatatsome pointwewouldbefacingtheactualloss, wheneveritmayhappen.
Nodoubtthisinfluenceslifechoicesin termsoffamilyplanning,careerchanges, movinghouse,futurefinancialneeds, pressureonpartnershipandotherfamily members.
Itprobablyalsoinfluencedourattitudeto everydaytasks,seizingthedayrather thanlookingtoofarintothefutureand alsoourrelationshipswithrelativesand friendsnotfacingthisinevitableloss.
Clickheretofindout moreaboutourhistory
MeanwhileweneededtoensureJen receivedthebestcareandopportunities tothrivewhilenotindulgingherforbad behaviourornegativeattitudes.In addition,weneededtobesensitivetothe needsandstressesfacedbyhersister Beki,whooftenhadtoacceptthe absenceofoneparentoncaredutyand couldpotentiallygrowjealousoftheextra attentionbeingfocussedonherelder sibling. Thankfully,astheybothmatured,they grewcloserandcametounderstandand acknowledgetheirdifferentneedsand anxietiesaswellassharetheirloveof music,adventure,travel,theatre,and dancedespitethesixyearagedifference.
Wehadknown,asJen’shealth deterioratedduringherlasttwelve months,thatthismomentwascoming, butitsimpactishuge,nomatterhow longithasbeenanticipated.
WewereabletobringBekihomeand drinkacupofteatogetheraswehad alwayslovedtodo,beforeJenpassed awaywithasmileonherface.Nomore pain.Shewasfree.
Afterwardstherefollowedaperiodwhen wejustwantedtobethethreeofusaswe cametotermswiththisenormousshiftin ourlives.Werespectedeachother's approachtodealingwithourloss.There wasnorightorwrongway.
Wehadneverconfrontedthefuneral plansortheneedofawill.Thatallfeltlike abetrayalofhope,sowecreatedan orderofservicethatwefeltreflected Jen'spersonality,optimism,andloveof differentmusicgenres.
BekisungAmazingGrace.Robbie William'sAngelsplayedastheservice began.OhHappyDayswasplayedatthe closeafterabeautifullysungIrishBlessing bythegiftedchoir.
WearesoproudthatBekireturnedto universitytocompletehercourseand workedhardtoachieveajobwhereshe thrives.
OurwatchwordistocelebrateJen wheneverwecanandwheneverweare together.Thedarkdaysandbadtimes are "putinabox".Sometimesevennow theyjumpoutunbiddenbutweavoid situationswherewebelievetheymight emerge.
Wedidfindthatearlierinitiativesbythe charity,includingtheServiceof Celebration,theBookofRemembrance andtheGalaxytributefundwerevery supportive,promotingthecelebratory aspectofalifelived,notjustalifelost.
Therosestillbloomsinourgardenand herbenchispassedandenjoyed,notjust byus,butbyresidentsandvisitorstothe towneveryday.
Seventeenyearshavepassedandwe missJeneverydaybutequallywe celebrateherlifeandherlegacywhichis ahugecomfort.
Thesetenetsofcommunity,connection,andlivingwellwithaninherited metabolicdisorderestablishedatourconceptionbytheGreenefamily backin1981,remainattheheartofourorganisationtoday.
Don’tmissourregularmonthlynewsletter sectionsinourmagazine
Ithasbeenanotherquietmonthfor publicannouncementsfornewly assessedmetabolicmedicines.
Wesawdraftdecisionspublishedfor Niemann-PickTypeABorTypeB X-LinkedHypophosphataemia
Alongsidemanymedicinesidentifiedby NICEforreview.ThismeansthatNICE wouldliketoassessthesemedicinesfor potentialinclusionintheNHSbuthasnot beenabletoprogressyet.
Clickheretofindoutmoreaboutthe draftdecisionsandthoseupforreview.
Ourpeersupportprogramme,Metabolic Connect,ishereforanyoneaffectedbyany inheritedmetabolicdisorder.
Itlookstomatchindividuals,orfamilies, lookingtomeetotherswhounderstand whatlife,andloss,withanIMDcanlooklike.
Considerregisteringfortheprogramme todayifyou’reseekingsupport,orfeelyou canprovidesupporttoothers.
We want to be where the people are
Weknowlifecanbebusy.Betweenwork,family,friends,school,errands,appointments andeverythinginbetweenitcanbehardtofindtime arecomingtoyou!We’reattendingMetabolic Clinicsthisyear,tomeetyou,answerquestions, andprovidesomecompanyandentertainment whilstyouwait.Willweseeyouthere?
OurcurrentupcomingMetabolicClinicsare:
Thursday19thofSeptember-GOSH Moredatesandlocationscomingsoon!
We’reworkingonincreasingourrangeofclinics anddates.Pleasenotealldatesaresubjecttochange.
Whetheryouareplanningyourholidaysorjustshoppingonline,make
Youarealwayswelcometoreachouttotheteam atMetabolicSupportUK,inawaythatsuitsyou.You cancallourfreephonehelplineMonday-Friday,10am-4pm, fillinthecontactformonourwebsite,orsendusanemail.
08006523181
www.metabolicsupportuk.org
contact@metabolicsupportuk.org
@MetabolicSupportUK @weareMSUK
@MetabolicSupportUK
This edition of Metabolic Matters only scratches the surface of the conversations and topics surrounding life-limiting conditions, end of lifecare,death,andbereavement.
Thank you to everyone who shared their story, thoughts, and experiences with us. We hope this edition makes you think, starts conversations, and ultimately acts as a memory of all those we have lovedandsaidgoodbyeto.
