Eular Stene Prize Book 2015 Online

8/20/2019 Eular Stene Prize Book 2015 Online

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ISSN 2306-4706 (Online)

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EDGAR STENE PRIZE 2015TAKING CONTROL OF MY LIFE: WORKING

TOGETHER WITH HEALTH PROFESSIONALS

TO ACHIEVE MY PERSONAL GOALS

Standing Committee of People with Arthritis/Rheumatism in Europe (PARE)


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EDGAR STENE PRIZE 2015 TAKING CONTROL OF MY LIFE:

WORKING TOGETHER WITH HEALTH PROFESSIONALS TO ACHIEVE MY PERSONAL GOALS

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ContentsEditorial 4

About Edgar Stene and competition rules 2015 5

Meet the 2015 Jury 6

Winning essay 2015 from Denmark 8

Selection of essays 2015:

Bulgaria 10

Cyprus 12

Czech Republic 14

Estonia 16

Germany 18

Hungary 20

Norway 22

Slovakia 24

Spain 26

United Kingdom 28Meet the other essayists 30

STENE PRIZE BOOKLET 2015

EULAR Vice President, representing PARE Marios Kouloumas

PARE Standing Committee Chairperson Diana Skingle (until 13 June 2015), Dieter Wiek (from 14 June 2015)

EULAR Secretariat Maria Batziou, Birte Glüsing, Florian Klett

Editor Kate Betteridge

Co-ordinator Birte Glüsing

Graphic Designer and Print Production FC-D Ltd, LondonPublisher EULAR Standing Committee of People with Arthritis/Rheumatism in Europe (PARE)

Number of copies – 1,600

The Standing Committee of PARE would like to thank all those who have contributed to this publication.

The European League Against Rheumatism (EULAR) is the organisation representing thepatient, health professional and scientific societies of rheumatology of all the European nations.

EULAR endeavours to stimulate, promote, and support the research, prevention, treatment andrehabilitation of rheumatic and musculoskeletal diseases (RMDs). Within EULAR, the nationalorganisations of people with RMDs across Europe work together and develop activities throughthe Standing Committee of PARE. For more information please visit www.eular.org

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A time to

reflect

I am honoured to have

been asked to introduce

the 2015 Edgar Stene Prize

competition essays to you.

I have long taken a specialinterest in the contest and

it is my pleasure to present

you with our winner

Charlotte Secher Jensen

from Denmark, and 10

runner-up essays from

across Europe.

EULAR values the Stene Prizegreatly. Written by people with

rheumatic and musculoskeletaldiseases (RMDs), each year thecompetition highlights theimportance of the need for allthree pillars of EULAR – thepatients, the health professionalsand the medical doctors – towork together.

As a health professional I haverepeatedly heard stories similarto those featured in this booklet. They have helped me

understand what living withRMDs means to different peopleand how it is possible to takecontrol despite having along-term condition. I am thusa great supporter of the StenePrize – and think that theexperiences shared in thisformat helps us move towardsa more person-centred care.

This year is no exception andthe theme is of particular

relevance to me: “Taking controlof my life: working together withhealth professionals to achieve

my personal goals”. Eachnational PARE memberorganisation first judged theircountry’s entries and chose oneto put forward to the formalStene Prize judging panel. Atotal of 24 essays entered thecompetition in 2015. I can onlyimagine what a difficult job the jury must have had choosinga winner!

As I read through the winningessays presented to you in thisbooklet, I noticed many sharedexperiences and themesemerging. Living with a long-term condition forces people toembrace life slightly differently,but successfully moving along arocky road may, in itself, bringunexpected values into life. It is,furthermore, clear from theessays that people with RMDswant a partnership with theirhealth professionals. They wantto be listened to, respected andseen as whole persons. Throughits 3-pillar approach, EULARworks hard to ensure the voice

of patients is always included.

All these stories illustratedetermination, perseveranceand resourcefulness. They showhow, if health professionals workwith their patients, they can helpthem find their own way morequickly. The aim of treatingpeople with RMDs should be tohelp them to be as independentas possible. But the patientneeds to play an active and

empowered role as a memberof the multi disciplinary team.

Communication is such animportant tool. For us as healthprofessionals it is to listen,explore, encourage and share– to see the person presentedbefore us, to work with them tohelp them achieve their goals.Some of these essays show theimpact when this does nothappen. I think all of us workingwith patients with RMDs mighttake time to think about our ownroles and practices as we readthrough this booklet.

I would like to take thisopportunity to thank all thecontributors to this year’s StenePrize booklet and I urgeeveryone to encourage friends,colleagues and peers to raiseawareness of it. Let usremember that at some point wewill all be patients. Let’s reflecton how we would want to betreated when that time comes.

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Prof Christina H Opava Vice President, EULAR,representing health professionals



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The

StenePrize

First awarded in June 1975 atthe EULAR Congress inHelsinki, Finland, the EdgarStene Prize was created byEULAR to honour the memoryof Edgar W Stene. Stene wasthe founder and Secretary-General of the NorwegianRheumatism Association andhimself a person withankylosing spondylitis (MorbusBechterew).

Preparations to create the prizefollowed the establishment of anew EULAR Constitution at theorganisation’s General Assembly in Paris, 26 May1973, which brought the“National Community Agenciesactive in the struggle againstrheumatic diseases” intoEULAR. The creation of aStanding Committee forCommunity Agencies, todaycalled the Standing Committeeof People with Arthritis/ Rheumatism in Europe (PARE),was put into practice at thesame time as the Constitution.

Professor J J de Blécourt from The Netherlands, the firstelected EULAR Vice Presidentrepresenting PARE, said aboutthe occasion: “We may speakof an historic moment in thehistory of EULAR. The basicphilosophy behind thisdevelopment is the fight againstrheumatism can only beeffective, efficient and extendedwhen not only the doctors

(rheumatologists) but also the‘rest of the community’ takepart in the work of EULAR (themanagement of the fight

against rheumatism). This isa modern way of organisinghealth care, research,fundraising, patient care,education, public relations, etc.”

Edgar Stene was born in 1919and was a police sergeant, asailor and a mechanic. DuringWorld War II he served in theallied forces’ navy and it wasthen that the onset of hisdisease began. The symptomsof the disease worsened andhis doctor recommendedhospitalisation, but he remainedin his job because of theimportance of his position as aship’s mechanic. After the warStene was involved in welfarework. He played an importantrole in Scandinavian andinternational organisations, andreceived recognition from theNorwegian King and theSwedish Federation AgainstRheumatism, among others.Edgar Stene was “… a greatpromoter of cooperationbetween doctors, patients and

community workers”1.

He advocated the union ofpeople with rheumatic andmusculoskeletal diseases(RMDs) in a specificorganisation to provide aplatform for effectivelyaddressing the issues thatconcerned them. He alsoemphasised the importance ofpeople with RMDs having anactive and positive attitude

towards their condition andpreparing themselvespsychologically and physicallyto face their challenges.

Rules of the 2015

Edgar Stene Prize

competition

Every year, the Stene Prize isawarded to the person with arheumatic or musculoskeletaldisease (RMD) submitting thebest essay describing his or herindividual experience of livingwith their condition. Competitiondetails are distributed to EULARmember organisations so theycan run the competitionnationally. Member organisationsselect the best entry from theircountry to submit to the EULAR

Secretariat for judging by theStene Prize jury.

For 2015, entry was open topeople with an RMD aged 16years and over. Entries can besubmitted in the native languageof the author as EULAR arrangesto translate national winningentries into English.

The winner of the Edgar StenePrize is announced by the

EULAR Standing Committee ofPARE on the EULAR websiteand in its newsletter. The Prize isawarded at the annual EuropeanCongress of Rheumatology. Thevalue of the prize is EURO 2,000and EULAR also covers the costof the winner attending thecongress to receive their prize.

1. All quotes in the text are taken from the Report

on the Community Agencies presented to theEULAR Executive Committee and the Reportfrom the liaison officer between community and

professional agencies against rheumatism to

the EULAR Executive Committee (Zurich, 1973)by Professor J. J. de Blécourt (The Netherlands).

“A great promoter of

co-operation between

doctors, patients and

community workers”

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The EdgarStene PrizeJury 2015– Meet the

JudgesEach year, a panel of

people with experienceor knowledge of

rheumatic andmusculoskeletal

diseases (RMDs) has thehonour of judging the

annual Edgar Stene Prizecompetition. This year

we welcome five judgeswho represent the three

pillars of EULAR, andwho come from a

number of differentcountries across Europe.

They are joined by theChair of the EULAR

Standing Committee ofPeople with Arthritis/

Rheumatism in Europe(PARE) and the EULAR

Vice President,

representing PARE whooversee the judging andoffer guidance to the

overall process.

Diana Skingle, UK. Chair,

EULAR Standing Committeeof PARE

“I look forward to the EdgarStene Prize Competition everyyear so I was honoured to beinvited to be an ex-officiomember of the 2015 jury. Theessays submitted by peoplewith RMDs are alwaysinsightful, inspirational andenlightening. This year was noexception.

The theme ‘Taking control ofmy life: working together withhealth professionals toachieve my personal goals’gave people living with RMDsthe opportunity to tell us theirexperiences of overcomingsome of the limitations ofliving with these diseases andof achieving things that theyhad thought impossible.Everyone has hopes anddreams. Living with an RMDoften presents challenges tothose ambitions.

However, by sharing personalaspirations with healthcareteams, and working togetherwith them through shareddecision-making, people withRMDs can set and achieverealistic milestones in order toreach particular goals.Whether those goals are towalk a longer distance eachday, to be able to play withtheir children or to return to

work, they illustrate that

people with RMDs can takecontrol of their lives inmeaningful ways that areimportant to each individual.”

Marios Kouloumas, Cyprus.

EULAR Vice President,

representing PARE

“It is a pleasure, once more,to be involved in this fantasticcompetition which hasbecome very popular among

people with RMDs acrossEurope. It is a very importanttool for people with RMDs toshare their thoughts,concerns and hopes for abetter future, and a life withimproved quality and dignity.

This year’s topic is veryimportant, especially forpeople living with a chronicdisease, because a successfullife is one where the person

can be actively engaged withtheir treatment and themanagement of their disease– as well as having thesupport of the healthprofessionals.

I was interested to read thisyear’s essays to see howthings can be improved – andhow the people with RMDsare making their owndecisions and choices fortheir lives and health in apartnership with the treatinghealth professionals.”

Nele Caeyers, Belgium.

PARE Board member, CEOof ReumaNet and Leader

of the 2015 Edgar Stene

Prize jury

“Reading and writing are twothings that have been extremelyimportant in my life ever since Iwas a child. Good stories andbooks offer me an unlimited wayinto imaginary worlds. Writinggives me the opportunity toclear my head and help others

by sharing my experiences.Writing offers a way to get a gripon things that can be verycomplicated and demanding. This is why I fully support theStene Prize competition and Ihave felt honoured to be part ofthe jury.

This year’s theme has broughtback a lot of memories of thetime I got my diagnosis ofsystemic lupus erythematosus(SLE). Unaware of what washappening to me, I put my faithin the hands of a strong team.But soon I was part of thatteam. We made decisionstogether and had livelydiscussions about treatmentoptions. When I got pregnant,the whole group was equallyexcited! The role of healthprofessionals can be so muchmore than only the medical part!

I have really enjoyed readingthe inspiring stories from allover Europe!”

Diana Skingle Marios Kouloumas Nele Caeyers Kjerstin Fjeldstad



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Kjerstin Fjeldstad, Norway.

Board member of theNorwegian League Against

Rheumatism

“It has been an honour to be amember of the jury for theStene Prize. I have beeninspired by the visionapplicants have for the future.

This year’s theme ‘Takingcontrol of my life: workingtogether with health

professionals to achieve mypersonal goals’ has given theauthors an opportunity tolook at their lives and howthey have reached theirpersonal goals. I haveenjoyed reading their essays.

I am 61 years old andspondyloarthritis (SPA) hasbeen my friend the last 30years. I still work, and I dovoluntary work as well. I

become involved in theNorwegian League AgainstRheumatism 30 years ago. Ihave been a board memberand a leader in a different partof the organisation.

I work at the NorwegianLabour and Welfare Administration. I work fulltime, but have one day offevery week for rehabilitation.”

Costas Ioulianos, Cyprus.

President ofcosmosrheuma+,

representing the health

professionals in

rheumatology

“Firstly, I would like to say howproud I feel to have been amember of the Stene Prize jurypanel. Due to my frequentinvolvement with people livingwith RMDs as a clinicalphysiotherapist, I have come

to the conclusion that there isan imperative need to involvepatient in all decisionsconcerning them and their life.

Since we talk aboutmultidisciplinary and patient-centered treatment, weshould support this – and withour actions. The patientshould be the group leaderand must be actively involvedin order to solve and managetheir problems. We have anobligation to feel/understandeverything concerning thepatient.

The problem is not only thedisease, but all the otherrelated problems that followwhich have to do with thepatient, their family, theiroccupation and, generally,their position in the broadcommunity.

By taking part in the judgingpanel I have gained a lot fromthe patients themselves – a

fact which is the most

important element towards thesuccess of our work.”

Dr Caroline Ospelt,

Switzerland. Liaison officer

EMerging EUlar NETwork

(EMEUNET), representing

the network of young

rheumatologists

“Serving as a member of theEdgar Stene Prize jury hasbeen a unique opportunity for

me to get a more personalinsight into patient’s sorrowand hopes. Even though I ama trained medical doctor, Ihave worked in basicresearch for more than 10years. Work in the lab cansometimes be frustrating andtedious, in particular whenyou forget about the actualpurpose of this work –namely to create knowledge

that brings forward newtherapies and a better life forpatients.

Reading the contributionsreminded me why the longworking hours and theendless attempts before anexperiment works areworthwhile. I enjoyed theessays and learning about thepatient’s views on one of themost central topics in living

with RMDs – taking controland working together withhealth professionals.”

Aïda Verstraeten, Belgium.

2014 essayist andrepresentative of young

people with RMDs

“I am 19 years old and fromFlanders, the Dutch speakingpart of Belgium. I am alanguage student, studying theDutch and English language. Ihave a rare form of juvenilearthritis and have lived with twoprosthetic implants (hip joints)for more than three years. Last

year I was a participant of thiscompetition and this year I havebeen part of the jury. Besides allof the sad and serious stuff, Idon’t let my arthritis take overmy life, even though it’s alwaysthere.

I am ambitious; I have dreamsof my own, too. So this year, Iwanted to know all about thepersonal goals of thecontestants. I wanted to knowwhere their passion comesfrom, what keeps them goingand how health professionalshelp with that. Putting this intowords for the Stene Prize mighthave been a huge step towardsachieving whatever it is youwant.

Just remember… Arthritismight be what you have, but itcan never be what you are.”

Dr Caroline Ospelt

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Costas Ioulianos Aïda Verstraeten

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Charlotte Secher Jensen

2015 Stene Prize

winner from Denmark

My name is CharlotteSecher Jensen. I am41 years old, marriedand live in Gjern,a village close toSilkeborgin. I have twochildren: a daughter

aged 16 years and ason aged 13.

I work part time for 12 hours aweek as a sales supporter in aconsultant firm. My tasks includebooking meetings, and optimisingtransport and logistics.

Over the last few years I have readabout the Edgar Stene Prize in themagazine LedSager fromGigtforeningen, Denmark’s patient

associaton, but the topic hadn’tbeen quite right for me toparticipate. This year I saw thepost on Gigtforeningen’sFacebook page and the topiccaught my interest.

I immediately felt that I hadsomething to share. I chose towrite because I wanted the healthprofessionals at the hospital tolearn how much a doctor ornurse’s way of acting can change

not only a patient’s experience ofthe consultation, but also how thepatient feels when he or sheleaves the hospital.

I still remember

that day… The day I

was diagnosed with

rheumatoid arthritis.

My thoughts were all over theplace. They whizzed round andround in circles, in utterconfusion. Why? What was it allabout? And what now? Thatnight – the night after that day –is what I remember the best.How I wept silently into my pillow

until you could have wrung it out.How I crept into the kitchen inthe dark so as not to wake thefamily, and turned the thermostaton the radiator up full. Iremember the reassuring,monotone clicking of the radiatorand the warmth, the meditativeshushing noise it made, like thesea, calming, giving me a kind ofartificial comfort.

“I sat thereheavy hearted”

I sat myself down awkwardly onthe hard kitchen floor and leantinto the radiator’s unfeelingarms, which gave me a warm,weak hug. I sat there in the dark,heavy hearted. I felt the burn onmy back where, I hoped, I wouldone day have my angel’s wings

in my fantasy world. The burningpain gave me a few seconds’peace from the sharp stabbing Ifelt in all my limbs.

My tears dried up. Something

happened. My thoughts foldedtheir wings together; I took a deepbreath and got determinedly tomy feet. A battle was raging in mymind between light and dark. Andthe light won! I intended to live inthe moment and in the future. Thiswas my life. My decisions. But Iquickly realised that I neededsomething to lean on. I had a long journey ahead of me.

I soon learnt the hard way that

there are three different types ofhospital visit. Those where Ileave the place no wiser thanbefore. A waste of time, wasteof money and waste of thepresent moment. Then there arethe visits where I leave in tears– either because I have not beenseen or listened to, or because Ihave had to behave too muchlike a chronically ill patient.

Perhaps it was one of those

visits where I had to haveexaminations that felt like aviolation of my exhausted bodyand frayed mind. A doctor or aharassed nurse would barelylook at me, giving non-committalcomments, I feel as if I am just anumber. They leave – I leave –with hopes dashed.

And then there is the last kind.My favourite visits. Those wherethe doctor or the nurse asks,“How are you?” and I answer, “Iam very well.” They nod, leanback attentively and say, “Andhow are you really?”

I am aware of the person

beneath the white coat, thewarmth of their eyes, that theywant me to be well, to have agood life, in spite of theexcruciating pain andpowerlessness. They have read– or at least looked through –my notes. They remember myname. I am not a number.

“Take control

of our illness” Those visits are the light at theend of the tunnel… When youare way down in the dumps andthe nurse smiles warmly at youand says that everything will bealright… That I can phone anytime for a chat about anything atall. She has seen it all before –she recognises thepowerlessness, the fear, the

helplessness about medicationand side effects. At long lastthere is someone who knowshow to press the right buttons.

I feel the weight lift from myshoulders. It’s going to be alright.My shoulders relax and I canbreathe freely again. She givesme hope and belief that thepresent moment is OK, the futurewill be better, that it is possible tolearn to live with rheumatism.

It takes time. Body and mindalike have to get used to theupheaval. And so do family and

Living in the moment

My journey: trusting again My journey: moving forwardsMy journey: hoping



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2015 Stene Prize winner – Denmarkfriends. You are no longer the

same. Your body creaks andgroans. I sit nervously in thewaiting room and look aroundme. I am surrounded by peopleyoung and old. I am sure they allhave rheumatism. Some havetheir loved ones with them;others sit there alone and wait. Ifeel the uncertainty we all haveabout the present and the future.No doubt we all have the sameburning desire to make the best

of our diagnosis, of our lives andto take control of our illness?

I sigh… Because of what iswritten in my notes, because Ididn’t get on with the ladydoctor I saw last time, because Idon’t want her ever to writeanother word in my notes. I hadstrength enough and was ablethat day amidst all myhopelessness, disappointmentand unbearable pain, to say no.

The nurse and I had a good talkover the telephone as she hadpromised. She took the call inspite of her heavy workload.

“I meet his

friendly eyes

with a cautious

smile”

I am nervous about who I amgoing to tell my life story to thistime. Every time it feels like a

10-minute exam in which I have

to relate as much as possiblebefore my time is up. Not somuch as a “Goodbye. See youagain in three months. Don’tforget the blood tests.” I prettywell know in advance what it willbe like. I feel anxiety weighingheavily on my pounding heart,and my invisible protectingwings cradling me so tightly Ican barely breathe.

I catch my breath when my

name is called. I look upanxiously and meet a pair ofwarm eyes. There he stands: thedoctor, welcoming, leaningcasually against the doorframein a T-shirt, white coatunbuttoned, jeans and trainers.Still, I am on my guard. I sitdown heavily on the chair andtry to swallow, but my mouth isdry. I am almost unable to startmy story all over again.

The doctor leans forward in hisoffice chair. He leafs through mynotes and I feel hope growwithin me. I look at him,surreptitiously. I meet his friendlyeyes with a cautious smile,which only widens when I hearthe sentence: “So, how areyou?” I hear myself lie. I answerhim, “I’m OK.”

He rolls his chair towards meand asks again, with a sparkle inhis eyes. I feel relief and realisethat I am smiling up into hiseyes, even though the tears are

trickling slowly down my cheeks.

Politely, he hands me a tissue,smiles encouragingly andexamines me carefully but firmly,with a comfortable pressure. Irelax. He scans my jaw, wipesaway the clear gel from mycheek with a practised gesture,and comments, jokingly, that itisn’t doing a lot for my hairstyle. Ismile. No matter that it is stillsticky all down my neck; he isforgiven. He hands me another

tissue, so that I can try myself toremove the last traces withoutcompletely ruining my hairdo.

“We are both

present in the

moment. The

tears stop”

While he is talking, explaining,reassuring, he holds my gaze.We are both present in themoment. The tears stop. I hearmyself tell the truth. I evenmanage to recognise that it willnot get better, that it is not goingto go away but that it will still bealright. I am OK.

He listens, he sees me, he hearswhat I say. His words give mehope and his interest helps

honest words find their way frommy thoughts to my tongue. Hecarefully examines every joint ofmy fingers, and his warmth,

vitality and charisma flow out to

feed my recognition that there isa life with rheumatoid arthritis.Maybe not the life I haddreamed of, but a good, full life.

“There is a life

with rheumatoid

arthritis”

I leave the hospital with a smile

on my face. Outside, thesunshine dries the last tears fromthe corners of my eyes. I take adeep breath, straighten my back,feel my inner strength awakenand walk purposefully over to thecar park, out into the world.

I am ready to live in the momentand meet the future. It ispossible to travel withrheumatism in life’s rucksack,provided you have help to pack

it properly. I embrace the presentmoment and I embrace life!

My journey: making a start

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My life was like

springtime –

exuberant and bright.

I had a happy

childhood with dear

parents, did well at

school, married

someone I loved and

had a beautiful baby.

Then IT came along suddenly,

uninvited – an insidious, unknowndisease. My hands started toshake, my head rolled back andmy heart was beating incessantly.I fell down into the arms of mylove and all was dark. On the 5May 2009 my spring turned intowinter. I don’t remember any of it. The days passed by with nomemory of them. That was howIT found me, that disease I’dnever heard of – lupus.

Day after day, month after month,for two years, lupus was myconstant companion. I had lostmy memory. I’d forgotten how toread and write. Once that happyand bubbly woman, I now lay inbed with blank eyes. I’d evenforgotten that I had a daughter –the most precious thing in my life! This is what the disease did tome… Plus cerebral vasculitis,pericardial effusion, haemolytic

anaemia, avascular necrosis ofthe hip joint, cortisone-inducedcataracts and ascites. From53kg, my weight shot up to 90.

My thick and wavy hair became

thin and flat. My pulse – rapid;desires – none; my muscles –weak; insomnia.

But somewhere up there,someone had written about whatshould happen to me and when,and so a miracle happened! Luckfound me.

“She showed me

how to deal withthe disease”

I first struck lucky with my brilliantdoctors. I’m grateful andappreciative of everybody at thehaematology department of SvetiGeorgi General Hospital inPlovdiv. They’re my guardianangels: the wonderful DrHristova, the caring Dr Georgievand the irreplaceable Prof

Goranov. Their accuratediagnosis brought me back tolife. My eyes were reopened –sad and painful, but open!

But there was another guardianangel who came to me at therheumatology department ofSveti Georgi – an incrediblewoman and a true professionalwith a big heart – Dr Stanislava Alimanska. I will be eternallygrateful to her for making it

possible for me to hug mydaughter again and to be next tomy husband. I thank her for every

moment I spend with my nearest

and dearest. I’m thankful to herthat my heart continues to beatas a mother, as a wife, as thechild of my parents, as a friend.She will always have a place inmy heart. She held me by myhand and showed me how todeal with the disease!

Dr Lina Stoyanova is also like acaring mother to me. Every dayshe would be by my side, andthe words of kindness she

whispered to me will stay withme forever.

And so, day-by-day, my springstarted to return. The luck ofhaving the right doctor andgetting the right treatmentbrought me back, step by step,to life. The wonderful nurses andother hospital staff also played apart in my good luck. To this day,they still call me “our child”.

“I want the

whole world to

hear about it”

So do you see how lucky I am? And I want the whole world tohear about it! I’ve also come thisfar because of my wonderfulhusband. He was my shadow,never let go of my hand, didn’t

allow my tears to soak myclothes. He fed me and dressedme, and gave me air and light.

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Penka VelkovaBulgaria

My name is Penka Velkova. I am 39 years

old and live in Plovdiv inBulgaria. I am marriedwith one child who is11 years old.

I studied Bulgarian languagestudies in Plovdiv University andI have a bachelor degree. I usedto work as a journalist on a small TV channel in Plovdiv. Now I aman owner of a small handmadecrafts company.

I read about the Edgar Stenecompetition online on theFacebook page of Bulgaria’sorganisation for people withrheumatic diseases. I decided toshare my experience andfeelings with other people whoface the same difficulties as me.

My spring

Penka Velkova November 2014: going to the cinema September 2014: trip to Bansko

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And my dear mother – I cannotforget her despondent eyes and

her hands when she stroked myhair that had been wrecked bythe medication. While this horribledisease hung over me, mymother was by my bedside dayand night! My eyes seared withpain, my trembling hands hidden,but her love and faith brought meback to life! My mother’s tearsflowed like a river and her kindwords were my solace. Shewatched over me for months onend. Only she knows how muchpain she endured. I’m alsofortunate with my father, whosekind eyes were full of tears for hissick little girl.

That’s my family. They are all mysecond piece of luck! I got to seemy little daughter again afterhaving spent two months inhospital. I was sad, despondentand frightened, but by now mythoughts and feelings had comeback to me. And there she was,my daughter Roksena, mybeautiful ray of sunshine. My littledarling came into the room andsaid “mummy”, which sowarmed my soul. Without hernoticing, I concealed my tears inher hair, and she just hugged andhugged me. Her little hands helda small necklace and she said:“This is for you, mummy! Wear it.It’ll bring you luck!”

That’s how I accepted thedisease. I learned to say “goodmorning” to it every morning, andwas happy to see the sun for yet

another day. I would go to bedand take the next pill wishing my

disease “Goodnight”. I got usedto the changes in myappearance: I cut off my long,wavy hair; I accepted my bodyhair; and learned to love all of my90 kilos. I would look people inthe eyes as I walked down thestreet, with my black walkingstick, because the disease wasstill gnawing at my bones and joints. But I kept on smiling,because for yet another day Icould see my little girl’s beautifuleyes, and could look forward tothe following day when I couldonce again say: “Hello, life!”

“I learned to

think positively”

My third piece of luck was myown life. It showed me who myreal friends were. They were theones who were next to me andby my bedside. They were theones who didn’t leave me sadand alone at home, but wouldtake me for walks every day.Good, wonderful friends – thereare only two or three of them butthey have wounds from my pain.With their help, I kept on smilingand enjoyed every single smallmoment. I’ll always have room inmy heart for them!

My fourth piece of luck wasmyself. We have to learn to relyon ourselves and learn to havepure thoughts, words and

actions. What we think is whathappens to us! I learned to think

positively. The book Mind Powerinto the 21st Century revealedthe essence of things to me, andthat all my thoughts, all myfeelings, all my words should begood.

The question I faced was: IT orme; the disease or life? Therewas only one option. I’m myfather’s strong girl, my mother’sdear daughter, my husband’sbeloved and a mother to a

beautiful daughter. I chose life! To this day I remember Dr Alimanska’s words: “We doctorsare doing everything that’snecessary. Your nearest anddearest are also by your side.However, if you don’t helpyourself, nothing will come out ofit.” So every day I startedrepeating positive words tomyself. Every day I would saythank you for being able to see

the sun and hear the birds sing,to love and be loved.

I learned some useful exercisesfor my body and eyes, yogaexercises and how to breatheproperly. Along with my medicaltreatment, I also prepared herbaltreatments. I discoveredsticklewort tea – old people callit “young blood”. I also had greattrust in goji berries.

And so, 730 days later and thedisease has gone away!

Remission… A word that I got tofind out in 2009 and a condition

that I had been hoping for twoyears to see in my next hospital

report. I achieved it thanks to allmy pieces of luck. Things havecarried on to this day in this way.I don’t look back; I just look atthe road ahead, and I think – andwill continue to think – positively.

I never utter the word disease. orcall my uninvited visitor by itsname. I just call it “IT”; the thingthat came and turned my wholeworld inside out. I’m sure ITsimply bumped into my life to

teach me a lesson. Have Ilearned and understood mylesson? I don’t know. At least I’mtrying my best, but I’m sure Ihave lots more to learn. I neverasked “why me?” There areplenty of things that we can’texplain, but we have to seek outtheir meanings and importance.For my part, I know that life is tooshort to waste it on insults, hate,and on bad thoughts and words.

“I love life and

everything life

has given me”

This is my victory and I have tocarry on, because I love life andeverything life has given me – awonderful family, faithful friendsand true feelings!

I hope that we all find ourpieces of luck! And for me, mybeautiful spring continues…

11

February 2009: with my husband

Ventsi on my birthday, 3 months

before the illness

January 2012: trip to Barcelona with

my husband Ventsi and my daughter

Roxena

May 2010: one year after treatment

start – with my husband Ventsi and

my daughter Roxena on her birthday

Oct 2014: with my family on friend’s

wedding party - me, my husband

Ventsi and my daughter Roxena

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Life is unpredictable,

which means we

always need to be

ready to handle

everything that comes

our way. Sometimes

things come to a deadend and we are forced

to change course. So

without complaining,

without putting

ourselves through the

business of

wondering “Why

me?”, we set off along

the new path life has

pointed out to us.

Something can happen to anyone of us at any time,something to make usreconsider our lifestyle, our wayof thinking, our goals and thecourse we have taken in ourlives. Whatever comes our way,there is always another side toit. And if we take the time toinvestigate that other side, it will

teach us something, it will makeus stronger. Every obstacle isalso an opportunity for biggerand more creative things.

When I was diagnosed withchronic rheumatic disease sixyears ago, my life was turnedupside down. I knew I wouldn’tbe able to do the things I usedto do, the way I used to dothem. I knew I would have to

reconsider my behaviour and myway of thinking. Realising it isone thing of course, andaccepting it and being able tomake practical changes to youreveryday life is a completelydifferent story.

All this seemed difficult at first andmade me withdraw and distancemyself from my family and friends.I was angry, scared and insecureabout the future… I was in denial

and incapable of going on, as ifmy life had no purpose!

At some point along the way,after seeing a great manydifferent doctors, I met onedoctor with whom I feltcomfortable discussing anythingthat was bothering me. He wasempathetic and that made mefeel safe. I started takingmedication and, at some pointwhen I started feeling a bit

better, I decided to hold myhead high and start living again. That was it; life began to have ameaning again!

I contacted an association forrheumatic diseases, where I felt Ihad found friends and even morethan just that. The people therewere very understanding, whichwas another stimulus to me inorder to take back control of my

life. After being told about theservices provided by theassociation in co-operation withvarious health professionals, Iregistered for a “feelingsself-management” workshop.

“I became

aware of

feelings I had

been hiding”I did feel slightly lost at first, butthe psychotherapist helped mebecome part of the group. Thatwas when I started to becomeaware of the feelings I had beenhiding in my soul for a long time. Anger, insecurity, fear, lack ofpatience… Feelings I was neitherable to handle nor realised I wasexperiencing. With the help of the

psychotherapist, I experiencedmy feelings with pain and tears,going down what I would call apath of redemption. I discovered

Holidays with Nicolas, my husband, in Greece

12

Making a

new start

The cover of my book titled

Yes I can

Souzi Makri

Souzi MakriCyprus

My name is Souzi Makriand I come from Cyprus.

I live in Limassol and Ihave two daughters –Simone who is 28and a professionalfreelance translator, andKonstantina who is 19and currently studyinglaw in the UK.

I have been part of thevolunteers’ force of CYPLAR,the Cyprus League AgainstRheumatism, for six years and Ihave participated in this essaycompetition before. I enjoywriting very much and my firstbook was published last May. Itis a book about my experiencewith rheumatic disease –acceptance, feelings andactions.

I am very excited to have beenselected to represent CYPLARin the Edgar Stene competition.

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practical ways to let my angergo, and ways to communicatewith those around me.

I was, at the same time, alsoseeing a specialist psychologist,with whom I focused onbehavioural and cognitive

therapy. This helped me a lot,because I learnt how to changemy way of thinking and how tostop seeing my condition as anobstacle to my life. Instead, Istarted seeing it as a spur tomaking a new start.

I was also taught how to changemy lifestyle, avoiding certainthings that exhausted me, takingshort breaks from my work andgoing back to it after I’d had

some rest. In other words, Idiscovered my body’s limits,which I would have to respect if Iwas to be able to stay active andcreative.

“I discovered

my body’s

limits”

Around that time, I also startedtaking psychology courses at theOpen University. Although I hadto study a lot at a time when I

was experiencing memoryproblems and having difficulties, Ididn’t “drop out”. It was hardwork but it helped me a lot indealing with the pain and thegeneral problems chronicillnesses can cause.

On a psychology course which Iwas taking in my country, thepsychologist presented us with abox of multi-coloured stones andasked us to choose one withoutlooking at the writing at thebottom. I chose patience becauseit was obviously something thatwas missing from my life.

Alongside treatment groups andself-discovery workshops, I alsostarted exercising every day. This

was to help strengthen mymuscles, which meant less pain.It was very difficult and a hugeeffort for me to get up everymorning to go to the gym. A littleaerobic exercise, stretching andmuscle strengthening… It washard at first and the great effort Ihad to put into it used to bringtears to my eyes.

My trainer, a rehabilitationspecialist, was always there to

encourage and support me. Iwould have given up withouthim! Slowly but steadily, I startedimproving. I was becoming more

flexible and my morning stiffnesswas reducing by the day. I findmorning exercise very beneficialbecause it gives me energy andI am able to continue my dailytasks with enthusiasm andgood spirits.

“This gave my

life meaning”

With help from mypsychotherapist and trainer, Ibegan to feel better. I startedworking for the rheumaticdisease association on avolunteer basis and this gave mylife meaning, as I had stopped

working while I was unwell. I alsoattended the chronic diseaseself-management workshopwhich taught me practical waysof coping from day to day, in thenew circumstances of my life.

I learnt many new things throughthe seminars and workshops Iattended and, for me, this is anew way of studying – a beautifulnew path through knowledge,meeting people, humbly offering

to my fellow human beings,being creative…

Yes, being creative. Myexperience with the disease gave

me the motivation to put thingsdown on paper, to write a book,opening my soul to the reader,expressing all the feelings I havehad all these years since thediagnosis, all my thoughts, mylife’s twists and turns, and the

bitterness I felt every time thecondition stopped me from doingsomething I wanted to do.

I am now training patients inself-management, transferringmy knowledge and experience tothem, which is great. I feel thatwith the guidance of healthprofessionals, and with patienceand perseverance, I haveregained control of my life. My lifeis creative and I am feeling

complete and happy.

“I am feeling

complete and

happy”

I have learnt that any unpleasantturn of events always has itspositive side and, with the help ofthe right people, we are all

perfectly capable of taking onresponsibility for our lives.

13

With Spyroula David and Persefoni Markidou during our Train the Trainer

course for RMD self-management

Our group on our self-management Train the Trainer course

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Hello! My name is

Leontýnka, I am

three years old and Ihave already been

through hell.

“I have

already been

through hell”

It started the day I

was born. On thatday, I first saw the

beautiful light of the

world. I was so

looking forward to

everything I had only

known from sounds.

To mummy, daddy,

my brother, and all

the wonders and

mysteries of the

world outside.

But then suddenly, alongsideall that beauty, a hellish pain

came that overshadowed allelse. I screamed and cried.Wailing, I begged mummy forhelp. I cried all day and allnight, and then immediatelyafterwards, again and again.

Suddenly I lost all sense ofwhat day it was, of whether itwas the sun or the moon thatwas shining. Everythingmerged into one enormous,relentless pain. All the beauty

that I had been looking forwardto so much had gone.

“I lost all

sense of what

day it was”

I could not see the outsideworld for the sea of tears inmy eyes.

Mummy knew that she couldnot help me by herself, so shetook me to see a doctor. Andthen another doctor. White

coat followed white coat as ifwhirling around on a clothesline

in the wind.

“He tried to break

my curse and

deliver me from

my torment”

Everyone turned mummy away.No one believed her. No onetook her seriously. Oh, if onlythey could understand mywails. I tried so hard to tellthem, but in vain. My effortswere rewarded with a hightemperature. Daily painalternated with nightly fevers ofabout 40 degrees. The onegood sign was that I againbegan to distinguish betweenday and night.

The white coats whirled againin the wind, and no onestopped to listen. Untilsuddenly, one fateful day, myknight in shining armour came

14

Ludmila TomáškováCzech Republic

My name is Ludmila Tomášková. I am 33

years old and live inDomazlice in the CzechRepublic. I am marriedand currenlty onparental leave.

I heard about the competitionfrom the head of my local CzechLeague Against Rheumatismclub in Domazlice. I chose toparticipate because this year‘sEdgar Stene Prize theme

interested me and I wantedshare my own experienceswith other people.

The power

of words

Ludmila Tomášková I love horses Leontýnka

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15

to my rescue, slashing throughthe pointless carousel of white

coats and liberating me frommy pain. He was the onlyperson who noticed my wails,who listened to my mummy.He tried. For almost a year, hetried to break my curse anddeliver me from my torment.But the riddle posed by themagician proved insoluble.

“The shackles

of my tormentslowly began

to crack”

The whole time, I tried tounderstand. To work out whateveryone around me wassaying. As they did notunderstand me, it was up tome to make the effort. Andthen, all of a sudden, the

turning point came… The dayon which I helped my knight torescue me. The day on whichmy lips moved and managed

to form the first fateful words.“My feet hurt,” I said.

“It will take

time to struggle

across the

overgrown

garden”

And it was then that theshackles of my torment slowly

began to crack.

My knight now knew how tosave me, and his lieutenantsfollowed him. Mummy and Iwere no longer alone. Theybegan to believe us and helpus. The door of the bewitchedcastle started inching ajar.

I know that it will be a whilebefore it is fully open. I knowthat the road beyond will be

thorny and that it will take me along time to struggle acrossthe overgrown garden so that Ican live completely free of pain.

But now I can speak, I believethat they will start listening.

That the white coats will hearwhat I have to say and not justflap about uselessly in thewind. And, if not, I will speak,and keep on speaking,because my words havepower. They have an immensepower which has opened thedoor to my recovery.

“My words

have power”Believe me, I will go further anduse my words to cure myselfand, I hope, others.

Fun on the ice This is fun and good for my hands

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“He loves me, he

loves me not. That’s

what daisies were

made for” sang a

beloved Estonian

singer a couple of

decades ago. The

daisy was one of my

favourite flowers

during my happy and

sunny childhood. I

loved running around

in meadows and

sometimes I would

squat and pick

daisies. There were

times when I plucked

the petals off the

flowers to see

whether I was loved

or not. Many years

have passed and it

may be strange, but

I miss squatting

more than I miss

picking daisies.

Squatting is actually

where the story of

my illness started.

Loves me, loves me not…

“There’s nothing

wrong with you”

It was summer 2012. It was justlike any other Estonian summer– warm and sometimes rainy. I’dgone to discover southernEstonia with some family and

friends, and one evening I wentto tuck in my little cousin. I don’tknow what made me squat as Iwas holding the child in my arms,but the pain that jolted throughmy left knee was unspeakable.Once I’d stopped crying, Idecided to immediately show myaching knee to a doctor andthat’s how I ended up in A&E forthe first time. The very first visitamong many… I was injectedwith a painkiller which allowedme to sleep peacefully, at leastthat night, and given a simplediagnosis – “there’s nothingwrong with you”.


There are actually several doctorswho have given me this simplediagnosis – “there’s nothingwrong with you”. Even before Iended up seeing arheumatologist, I tried showing

my knee to an orthopaedist anda surgeon. One day, I ran into afriend as I was leaving the clinic.“What’s the matter with you

then?” my friend asked. “Well, Iwas told again that there’snothing wrong with me,” Ianswered as tears started rollingdown my cheeks while I wasstanding there in the middle ofthe street. Because there’s onething that’s worse than pain, andthat’s not knowing what’scausing it.

Now I know that polyarthritis is adisease that doesn’t start by thebook. Every person is differentand that’s why the way thedisease progressed was alsodifferent. Almost every bookabout rheumatism says that thedisease first affects small jointsand the joints ache in pairs but, inmy case, it took a long timebefore 10-odd joints becameaffected by the disease insteadof just one knee.


It was a long road that finally tookme to my present doctor and thisdoctor’s wonderful nurse. I havethe best family doctor possible,who has written me mountains ofdifferent referrals and constantlykeeps an eye on my progress.Even after I hadn’t been able tosleep properly for nights (my

joints were stiff because of thearthritis and it was bothering me)and it was plain to see that I waslimping, some doctors still

16

Triin PobbolEstonia

My name is TriinPobbol. I am 30 years

old and work in a localcounty of Estonia as adirector of thedevelopment andplanning department. Iam currently single andlive in Paide which ismy hometown.

I read about the contest fromReumaKiri which is publishedonce a quarter and issued bythe Estonian Rheumatism Association. After reading aboutthe contest, I decided to sharemy thoughts and feelings aboutthe disease.

Loves me,

loves me not...

Triin Pobbol Joy from walking in any weather With my mother Liive



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wanted to convince me that therewas obviously nothing wrongwith me. The computer scanshowed no injury and the blood

test showed no inflammation. Ifthe textbooks say that everythingis fine, then everything IS fine.

“Everything

IS fine”

Later on, fluid startedaccumulating in my aching kneeso I had to have the fluidremoved. The doctor who carried

out the procedure looked like he’dwatched the scariest horror moviethe night before and was noweager to try something horrible onme. It really hurt so much that Ialmost passed out. Although I’vehad this procedure done to meseveral times since then, it’s neverhurt again. So it does depend onthe doctor, after all.

“It does dependon the doctor”


Things have to get really badbefore they can get better, andthis is why I finally ended upseeing my present doctor. Thisdoctor’s determination anddesire to help me has given meback the joy of life that I wasabout to lose. The symptoms ofpolyarthritis – the extreme fatigueand the weight increase causedby medication – as well as not

knowing what the future mayhold – were (and sometimes stillare) unbearable to me.

And then there’s the pain. Theall-encompassing pain. I can saythat my doctor started tounderstand me. Yes, they alsodid tests, looked at images andassessed my joints. But theylistened. Once, there was a longqueue behind the doctor’s door. Ithought it looked like a conveyorbelt and I wouldn’t have the timeto tell the doctor about myconcerns. But no, they listened tome and dealt with my concerns.

Thanks to them, I’ve beenreceiving biological treatment forsix months and, earlier today, Isigned my consent to take part inthe tests of a biological drug forthe next 266 weeks of my life. Itrust this doctor with my life.


The husband is the head and thewoman the neck in the familyand, likewise, every good doctor

needs a dependable nurse whosupports and helps the doctor.My doctor’s nurse Kati seems tobe just like that.

The first time I met Kati, shelearned that I hated having myblood taken. I just passed out inher room. After that, she hastried to hit the thin veins in myarms dozens of times. But if theblood doesn’t want to come out,it won’t come out. One time I

noticed that Kati was seriouslyworried that she would hurt meand I would get dizzy again and

maybe we should go to theblood centre, as the only thingthe nurses working there do allday is stick needles into people

and draw out blood. “But you’vealways done it, so you can do ittoday as well,” I said to consoleher and, indeed, she managed totake my blood once again. I trusther with my life as well.


“This doctor

was determined

to help me”My journey to biologicaltreatment and the hope that oneday I may wake up and feel nopain at all has been a long one. Iknow that, although I’m only 30years old, I’ve found myself a“lovely companion” in the shapeof inflammatory polyarthritis andthis companion will stay with meuntil the end of my days. Yes, the

biological drug makes it easier,prednisolone and diclofenac andother drugs also make it easier,and I have the support of mydoctors, but… One Sundaywhen I was laying in bed andgoing crazy with the pain and theexhaustion, I made a decision: Iwould become my own biggestcritic, friend and lover.

I decided to move every day. Thehardest and longest step for

anyone trying to exercise is fromthe sofa to the front door, butdoing it when it feels like

everything in you is in painexcept for the nail on your left bigtoe and the seventh hair in yourright eyebrow makes it

particularly difficult.

One of my friends urged me togo for walks in the morning tokick-start my days. This morningexercise with the stiffness of joints is even more difficult – it’snot just sleep trying to hold youback, the pain also gets in theway. My friend promised to comewith me the first time, but shewas still fast asleep at the agreedtime. I have managed to

kick-start my days with thesewalks on several mornings, butbeing mobile in the evenings isstill more my thing.

Today, I will also go for a smallround of Nordic walking in myhometown to celebrate the startof the biological drug tests that Iwill be a part of for the next 266weeks. I don’t care about thesnow and storms and the darkEstonian winter – I feel that my

good doctor, the drugs that worka little and my will to love myselfgive me some hope. I’ve decidedto live my life as well as possiblewith the disease I’ve got.

Therefore, loves me, loves menot… I LOVE!

17

Needles are uncomfortable, but I

am not afraid to inject myself

Family support is very important: with my brother and cousins on my

grandmother’s 100th birthday

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My first years

with rheumatism

resembled a science

fiction film – it was

1980 and I was 10

years old. I was lost,

not only in pain, but

also in my life. My

parents did not

believe me when I

could hardly walk in

the morning and play

in the afternoon. Even

a stubborn attack of

fever did not help me

to be believed –

instead it gave me the

status of something

special. I now counted

as an “interesting

case” in the countless

clinics in which I was

passed around from

doctor to student,

from auditorium to

lecture hall.

And when I asked what was

happening to me, whatexaminations were being carriedout, whether I was going to die, Inever got an answer. I felt as if I

had been spirited away byextra-terrestrials who dressed inwhite coats and masks,strapped me to tables, stuckneedles into me both front andback and experimented on me. Icouldn’t understand them. Theywere not from my world.

Three years and two hospitals

later I was sent to arheumatology clinic for children.I was all skin and bone, andunable to walk more than threesteps. People in white coats –aliens in my eyes – caused meto panic.

“We have all

succeeded in

getting our lives

and illnesses

under our own

control”

When I first met my new warddoctor, Dr Ackermann, itoccurred to me that he was justlike an absent-minded professorfrom a children’s book. Hisgreying hair was generallyunkempt, his white coat wascreased and the glassesperched on his nose hid his

eyes from view. He smelled ofpipe smoke, which is howpeople often knew where hewas at any given moment. Iliked that because that made itpossible to get out of his way.

On his rounds, he would pickup the pictures that I hadpainted to look at them. I

snatched them away from him. That was too intimate for me!He might well have needed topotter about in my veins, butnot in my creativity! When I hidthe pictures under the blanket,he would look at me in shockwith his hand still out stretched.He was absolutely paralysedand I understood that mybehaviour hurt him.

That was new. I was capable of

hurting his feelings! The doctor! The alien! If I was able to woundhim then he had to be on anequal footing with me! Insteadof being an interesting case, achild without a say, I hadbecome an actor!

The germ of trust in this man, thatwe children called “Acki”, beganto sprout. I started talking aboutmyself, about my pains, my fearof the needle and bad prospects.

Dr Ackermann did not fob me offby saying “everything will be allright”. Instead he was ruthlesslyhonest. For me, as a 13-year-old

18

Maiken BratheGermany

My name is MaikenBrathe and I come from

Elmshorn, near Hamburgin northern Germany. Iam 44 years old. I amnot married but I havebeen in a relationship for20 years.

I have had polyarthritis in allmy joints since 1980 when Iwas 10 years old. I am severelydisabled by the disease.

I became aware of the EdgarStene Prize through theGerman Rheumatism League’speriodical Mobil .

On aliens, records

and pipe smoke

Maiken Brathe Our Acki in 1985 Me in 1984

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19/36

girl, that was the highest form ofrespect that a doctor paid me.Being honest.

Acki had no time for tears.Instead of comfort andhandkerchiefs, there werechallenges like listening to myinner voice, recognising my ownneeds and trusting myself –because not every therapysuggested by a doctor wasactually appropriate. In the past,other clinics have shown thisand I bear the proofs of this inthe deformities that I still have inmy hands.

Knee punctures made mescream and howl. Acki did notscold me but remarked drily,“Your neighbour in the ward iswaiting outside and she isyounger than you. You’ll makeher afraid.” I didn’t want that andso I pulled myself together.Caring about other people… That’s what he was teaching meby saying that. And after thepuncture, he would say, “Many

congratulations, you have brokenthe clinic record! So far, nobodyhas had so much fluid on theknee as you.” I was 13 years oldand proud of my record.

Somehow, in the operatingtheatre in the basement, I beganto notice what I gained fromhaving rheumatism, quite apartfrom the points scoring and beinga record holder. By this, I don’tmean free periods in the lessontimetable or more time to writeclass assignments butrecognising the social skills that I

learnt through my illness. At thetime, of course, that’s not what Icalled them, but I understood thatI was certainly entitled to hold my

head up straight and self-confidently, even if the rest of mybody was twisted and painful.

Through Dr Ackermann’sinstructions to listen to myself, Igained control over my situation.He did not gloss over where Iwas starting from, nor did he sayI was crazy when I set goals formyself that I would never be ableto achieve. He taught me tofollow my goals but not to fix my

gaze on the unattainable. Thatwould only discourage me onmy way. I was to concentrate onthe little steps and stages, andaim for these.

Without anyone needing to pointme in the right direction, anotherachievable way opened up forme. I never did become areporter in Chile, but I didcomplete my studies in Germanand journalism. And that despite

my teacher at the time takingbets on whether I would evermanage to do my A levelsbecause of all the hours I missedthrough illness!

During my teenage years, Acki’sand my opinions often clashedand harmonised as well as mudpacks and ice packs on thesame joint at the same time. Weoften argued over political topics,though disputes were also agame between us – a mixture ofteasing, serious exchanges ofviews and a type of mutual liking.

Each dispute fuelled mymaturation process towardsindependence.

Acki is dead now. He died lastsummer. We stayed in contactthroughout the years. I hadknown him for over 30 years. Through social networks Iasked former patients whetherwe should put into words whatour ward doctor had meant tous for his funeral. Plenty ofcontributions trickled in, someof them from children fromdifferent decades whom I hadnever known!

I could see myself reflected in alltheir messages. These peopleexpressed in words what “Our Acki” had embodied for me. “Lifesaver”, “Second dad”, “Confidant”,“inspirational”, “a bit crazy”, but aHUMAN BEING JUST LIKE US!

“Without

respect and

empathy, thebest training

qualifications

amount to

nothing”

Overcoming challenges,accepting the illness without

being defeated by it – that is whatwe learnt from him. Without him,we would probably never haveseen the fragrance of pipe smoke

as something good, and many ofus might never be playing chesstoday. Without “Our Acki”, noneof us would have become the

people that we are today.

Dr Ackermann had no children ofhis own and yet, at the same time,he had more than you couldbelieve possible. That’s us – hisformer patients from severaldecades! All of us with a firmfooting in life, even if our stability isbased on rheumatic feet orprosthetics. We have allsucceeded in getting our lives andillnesses under our own control.

Doctors are not gods in white,not aliens – they are people frommy planet and, if they want to,they also speak my language. Ilearnt that from Dr Ackermann.

Without respect and empathy,the best medical or therapeutictraining qualifications amount tonothing. Acki already possessedthese tools at a time, in the1980s, when people in many

places still thought thatrheumatism was an oldperson’s disease and that sickchildren were just interestingcases. To me, a handicappedlittle girl, he restored myself-esteem and my dignity.

His eye-to-eye encounters withme helped me and hundreds ofother sick children to discoverand nurture new capabilitieswithin ourselves – ruthless

optimism, toughness and a beliefin myself. And belief in a happyending. Despite rheumatism. Orprecisely because of it.

19

Today Dr Ackermann in 2012

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At the age of 33 I was

a proud, strong, hard-

working miner when,

in the autumn of 1980,

polyarthritis suddenly

set in following an

accident-related kneeoperation. My limbs

stiffened; my health

fell apart within a

few months.

For the sake of my three youngchildren and their future I dideverything I could, even though Icollapsed many times at work.For months my wife had been

helping me to get dressed andthis reality check gave me a hugeshock. At the height of mystrength I had become unable todo anything because of pain. I just had to accept reality: I wasnot able to do anything useful formy family or myself.

Even though I thought I wasstrong, sometimes I cried. I wasvery ashamed of this, as well asof the fact that I was walking in a

strange way. In the summer of1985 I had no option but toaccept retirement. This was, forme, the biggest failure. I was

living in a numb, isolated way. Iwas looking for any possibility ofchange, but my weakness andpain stopped me. Today, I nowknow that there is life andopportunity beyond the pain!

“There is life andopportunitybeyond the pain”

The length of my stride was themere length of a foot, and I wassteadier on my feet whensomebody was holding my arm.I was only able to sit down orget up if I rested my elbows onthe table. Due to the severe pain

I did not even go for thetreatments and as, a defencemechanism, I was moving lessand less. I felt envious of all thepeople in wheelchairs, because“they do not need to walk”. Iwas desperate to retain myability to drive.

I met a physiotherapist, Erzsike,who wanted to help me. I wasuncertain and I felt ashamed thatI had been so unlucky so young.

Despite my weakness sheaccepted me (whilst I have onlyaccepted myself years later). She

placed me carefully on a mat andwe did careful exercises, which Ithen had to continue at home asmy homework.

Later she asked, “Mr Adamecz,have you done your exercises?” Iwas quite startled but, in

preparation for her asking thisquestion again, I forced myself todo the exercises because I couldnot lie – especially not to aperson who was helping me withso much commitment. We haveremained friends to this day. Shewas my witness at my weddingand is godmother to mydaughter, Anikó, who was bornin 1996.

After I wake up, the daily

exercises are now part of my lifeas a ritual. I slide down from thesettee onto the carpet and, afterthe stretching exercises, I climbback onto the settee andcontinue with my sitting-downexercises. I smile at myself, at myclumsy movements – thoughwho on earth could move anymore gracefully with so muchstiffness and pain? A slightimprovement in my movement

and physical condition hasencouraged me to continue withthis because I must not just letmyself go.

20

László AdameczHungary

My name is László Adamecz. I am a retired

miner living in a countrytown in Hungary called Tatabánya. I am 68years old, married withfour children and agrandchild.

My mission is to help otherpeople with RMDs to overcometheir problems and teachself-management by means ofbody and soul.

I learned about the Stene Prizefrom the Hungarian rheumatismleague.

There’s life and opportunity

beyond the pain!

László Adamecz Typewriting my poems Nostalgic mine visit

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The stiffness in my wrists andfingers caused great pain but,even worse, people used to callme “crippled” behind my back. Ihad a number of therapeutic

treatments in hospitals andsanatoriums, and had quite afew surprises. A very kind nursetold me that if I got cramps inmy fingers at home I shouldhave them bandaged onto achopping board covered withparsley. I almost laughed at heras I had never heard anythinglike this before.

“I must not justlet myself go”

Two months later this was nolonger so funny when thefingers of both my hands hadto be straightened out.Underwater exercises,individual exercises andswimming brought home thereality of the shortfalls in mymobility and physical condition.

Yet by that time I was able tofeel happy about all of thisbecause, for many years, I hadnot had the opportunity to doany of this.

When I got home I tried toremedy all my shortfalls. Myhands were very painful whilst Iwas swimming, but I massagedthem very often. Years later Icould swim longer distancesand this gave me so much joy.

Slowly and gradually I was ableto swim up to 1000 – 1300metres. With the help of adoctor I changed my diet and

with regular exercise I lostalmost 20 kilograms within ayear. This made walking mucheasier for me.

I can thank my GP andpsychiatrist for easing myisolation and for helping me toopen up to the world again. This gave me the chance tolive! Fortunately I met otherfellow patients, who asked forhelp. “Guys, I can barely keepgoing myself,” I replied, but Icould not say no. Myconscience could not allow meto be indifferent and I started toorganise things. This is how Ifound opportunities andself-confidence from knowingthat I could be useful.

At first I took part in communityservices to help people, grittingmy teeth because of mycondition. My knees had to bedrained from time to time, but Icould not give up! There weredance events in our club.Slowly and gradually I startedto take part in them. Many ofus realised that dancing is anexcellent overall physicalexercise for the whole body so,even though we were notgraceful, we were happy todance. I recommend dancingas a group exercise fortherapeutic purposes.

I am always grateful to thedoctors, nurses andphysiotherapists who, through

their work and humanity, helpedto improve my condition. I wasable to thank them especiallywith my determination and

complaint-free behaviour. Iwas able to deserve theirencouragement and trust.

“Dancing is anexcellent physicalexercise”

I exercise every morning on thecarpet in the hope that today’sattempt will strengthen mychances for tomorrow. So byaccepting pain there could be achance for healing. When peoplesaw me struggling while

swimming or cycling, they askedme who I wanted to prove myselfto. I said, “to myself”, because Ibecame weak when I was youngand, even now at the age of 67, Itry to create something on whichto base my old age.

Today, I can now say that with thetreatments and the daily exercisesI am able to walk with the steps ofa grown-up man. My wish wasgranted. Even though it took

about 30 years, it was worth it!I am very grateful to all thosewho healed me. After I lost myhealth and my hope, they taughtme to fight. I got strength andencouragement from them toachieve my hopes and wishes,and I am now able to do workthat makes me and myenvironment happy.

I take every opportunity toencourage my fellow patients torealise that the person who cando the most for you is you! Manypeople remember and

acknowledge the extent bywhich my stamina has improved.Nowadays I am able to stand onmy feet for hours whilst in thepast I could only just stand for 10

– 20 minutes.

“Look for the opportunitieswhere you can find happinessfor yourself and for others,” Iencourage them. I have learntthat if you help others, you alsohelp yourself, because the loveyou give to others can heal youas well. I was able to do this andothers can do it too.

It took a long time for regular

exercise to become a well-established routine for me, but Irealised the beneficial effect andit has improved my generalwellbeing. All of this has givenme the strength to feel thatmental and emotional attemptsare not enough to achieve yourgoals. I have had to do a lot formyself physically as well.

Humour and self-irony also madeit easier for me to accept the

difficulties in life. My hands andfingers will remain stiff for the restof my life, but I tell those who askme about them that they remainbent because I am constantlygiving hugs. I try to keep order inmy soul and thoughts, and spendtime only with nice things. Everynight I give thanks for all the manygood things I have.

The second 33 years of my life,though full of struggle and pain,

have been more joyful andvaluable than the first 33 years Ispent in good health. I wish this joy to all my fellow patients.

21

Daily exercises are part of my life

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2008

In the interval between sleepand waking, the pain takeshold of me.

Shoots arrows of torment intothe small of my back.

Knife blades into myfinger joints.

Cramps in my stomach.

Swollen, sore feet touchthe floor.

I get up, even though I don’twant to.

“My hands grip

the banister.

I pull myself

upstairs”

Force myself to go tothe bathroom.

Lean on the wall.

I manage to get to the bath.

Shower the worst of the painaway down the drain.

Get some clothes on.

Socks are the worst.

“In the midst

of sleep I start

to dread the

next day”

Everything hurts.

My hands grip the banister.

I pull myself upstairs.

I take my painkillers.

The day begins, and it’s fine.

It’s fine.

I go to work.

I’m OK outside.

Afterwards I lie on the sofa untilnight comes and it’s time to goto bed again.

Walking backwards, I godownstairs to escape from theday, and in the midst of sleep Istart to dread the next day.

The illness came gradually and

really broke out when myhusband was away on aninternational operation in Afghanistan.

He came home, but thefight continued.

The stress in my body wasso great.

2014

In the interval between sleepand waking, I find I am lookingforward to getting up.

“I find I am

looking forward

to getting up”

My back is a bit sore becauseof the aqua aerobics I did

yesterday.

My fingers are a bit stiff afterwriting yet another piece.

22

Janne Aasebø JohnsenNorway

My name is Janne Aasebø Johnsen. I am

47 years old, I live inLillehammer and I ammarried with a grown-up daughter.

I came across the essaycompetition by chance onthe Norwegian Rheumatism Association’s website. It caughtmy attention because it talkedabout taking control of yourown life. I feel I have real control

of my illness now, but I have notgot to where I am today withoutthe help of friendly, supportive,attentive and skilled specialists.I decided to enter to explain just that.

I am a qualified teacher andhave worked at LillehammerSchool for 20 years. I have alsowritten books for children andyoung people since 2004.

The angels along

the way

Janne Aasebø Johnsen The angels along my way Lillehammer Hospital: the place I

began my journey back to health

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The pains in my stomachhave eased.

I bounce into the bathroom.

Look forward to greeting the

day.

Go upstairs, eat breakfast andtake my cod liver oil capsules.

Work, lecture, amateur theatre,no end of clubs and writingprojects.

The illness is dormant.

“Wellness

came gradually”

Wellness came gradually, but Iam absolutely certain I gotbetter because of all the angelsI met along the way from 2008to 2014. The angels who putthe illness to sleep.

The GP who quickly realisedthat I needed to be referred to

the rheumatism hospital whereI have been treated ever since. Always with respect andalways taking me seriously.

The rheumatologist whounderstood that I needed to beadmitted as soon as possible.

The nurse who talked to meand comforted me when I was

afraid of the new drugs.

The physiotherapist who taughtme the difference betweengood and bad pain.

The dietician who told me thatpeople with rheumatism reactto different foods.

The social worker who helpedme to manage my life.

The occupational therapist whoshowed me finger exercisesand equipment that could helpme.

The activator who showed thatcreative work reduces stress.

The healthcare worker whotaught me to relax with a hotcompress.

The psychiatrist who helpedme to understand that myillness was down to fear.

The physiotherapist who taughtme to exercise effectively.

“I am certain I

got betterbecause of all the

angels I met

along the way”

The rheumatologist who sawthat the illness had burnt itselfout and said I could try tomanage without drugs. Still, Icould come back any time.

They are still keeping an eye onme.

My employer who arranges myday and understands that Ihave to exercise every day.

The swimming group thatincluded me.

My friend who gave me a CD ofrelaxation exercises.

My editor who let me go onwriting.

It turned around slowly, but acrucial moment was when Irealised that I had an illnesswhere my body was attackingitself.

The first thing I did was to stopattacking myself.

What made me well?

The little conversations.

The looks.

The trust.

The suggestions.

The books.

The exercises.

… And all the angels alongthe way.

Angels are with me on every step of my journey

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24

Veronika CervenkovaSlovakia

My name is VeronikaCervenkova. I am a

20-year-old studentstudying at theUniversity of Aberdeenin Scotland althoughmy hometown isBratislava in Slovakia.I am currently on ayear-long exchangeprogramme at theUniversity of NewMexico in the USA.

I learned about the Stene Prizecompetition via an email fromour youth rheumatoid Klub Klbik.I chose to participate because Ihave never thanked the peoplewho have helped me with theirincredible work enough.

Also, I think it is a great way toshow people with similarproblems that everything ispossible even though the road

might have many obstacles.

When I was two years

old, I was diagnosed

with one of the most

severe forms of

rheumatoid arthritis.

In our society today it

is normal that, as

soon as you have a

disability of any type,

you are automatically

put in a box labelled

“invalid” wherever

you go.

“You are

automatically

put in a boxlabelled ‘invalid’”

Our healthcare system is noexception. Many dreams andgoals of disabled peopleare destroyed by doctorsthemselves who fail tosupport patients in theiraspirations. The result is thatpatients expect always to beundervalued by others and

this reinforces the idea thatthey will never achieveanything in life.

Exceptions prove the rule. Ihave also found people who notonly supported me in my goals,but also provided me withsubstantial help in achievingthem. I’m talking about mydoctor – a rheumatologist –and my rehabilitation nurse.

When I was diagnosed with the

disability, I spent a lot of time atwhat was then named the VÚRCH (Research Institute ofRheumatic Diseases) and isnow the NÚRCH (NationalInstitute of Rheumatic Diseases)in Piešt’any, where I underwentexaminations as well as veryimportant procedures.

My doctor, who has remainedmy doctor to this day, told my

parents that we had come “atthe eleventh hour”. Had thedisease been diagnosed later,it might have lead topermanent consequences,and even confinement to awheelchair. Exercise had to bepart of my daily schedule. Mymovements back then werevery restricted, so I had tolearn basic things fromscratch: how to hold a spoon,how to walk properly.

My stays in Piešt’any werealways of limited duration, so I

needed to find a rehabilitationworker in Bratislava where Ilived. What seemed like quite asimple task turned out to bevery difficult and almostimpossible in fact. No one wasqualified to work withrheumatic diseases, andrehabilitation staff preferrednot to have me on their hands.

Every rehabilitation centre anddepartment turned me away.We were reduced to tears.

Finally, fate brought me togetherwith a rehabilitation nurse calledMajka. She was willing to trainme in spite of my very youngage and my rheumatism. Majkahad previously worked atNÚRCH as a rehabilitationnurse. When I met her, she was

working at the Military Hospitalas the chief nurse in therehabilitation department.

“She helped me

become a full

person with a

full life”

Majka took me under her wingand trained me and helpedme in whatever way shecould. After a while, as the

The long road

to success

Veronika Cervenkova Enjoying time with my awesome

parents and sister

Making dreams come true with beautiful view at Golden Gate Bridge

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demands of the school I wasattending grew and I began tohave less and less time, Majkawould come to my home forrehabilitation sessions withoutthe slightest hesitation. It was,therefore, possible for me tocomplete my rehabilitationexercises in peace and thento return to my studies.

It is impossible to place avalue on the assistance andhelp that Majka has given meover the last 15 years. From apatient who narrowly escapedlife in a wheelchair, she hasmade me into a person whosedisability is invisible to others.Sometimes, the true value ofa person’s work can only beseen later on, when looking

back at what was andcomparing it with what is. Thechange is incredible, but itcame at a high price in tearsand pain for me, whiledemanding time, patience andstrong nerves from Majka.She helped me become a fullperson with a full life.

I am achieving my goals todaywith a huge amount of helpand support from my parentsand my rheumatologist, whohas never allowed me towithdraw into a shell where

everyone would feel sorry forme. The basis for the successof any disabled person is hisor her approach to thedisease and to life. Thisapproach is initially formed, inparticular, by the doctor andthe people who surround you.My doctor never permitted meto feel sorry for myself;

instead, she supported me inmy hard work and studies.

As with any other disabil ity,rheumatism partially restrictseveryday life and it is,therefore, very important forme to study. I have learntlanguages since childhood. Iwas accepted into an Englishbilingual high school and Iwanted to study abroad for a

year, as is common in suchschools. Since my mainlanguage was English, Iopted for the USA.

“The true value

of a person’s

work can only

be seen later”

My doctor disagreed at first,but conceded after the rightarguments had been made.

At the time, my condition hadlong been stabilised, thanksin part to the biologicaltreatment I underwent forseveral years. My stay in theUS passed without incident,and my condition evenimproved a little. I was not atall sick, and I felt a lot better.

Af ter return ing home, I knewthat I would completesecondary school here, butthen go abroad again foruniversity. All of myapplications were addressedabroad and I was acceptedby a number of universities invarious countries. My doctorwas less surprised by mychoice of university than bymy decision to study abroad

while still at secondaryschool.

Today, I am studying inScotland and the results ofmy studies have led to theselection of anotherexchange trip to the US.Since studying abroad, myhealthcare results haveimproved, and I feel muchbetter physically as well asmentally. My doctorcontinues to support me infulfilling my dreams andgoals. Despite my disability, I

am doing and studying what Iwant, where I want.

“I feel much

better physically

as well as

mentally” The kind of doctors who donot support patients in theiractivities – and who would nothave allowed me to goanywhere – are still around.But I remain grateful forpeople such as Majka, who issadly no longer with us, andmy rheumatologist. They areproof that even if one personsays “no” a hundred times,

someone else will alwayscome along who will go withyou against the flow and giveyou the help and supportyou need.

25

Making new friends while travelling

around California

At breathtaking Lake Tahoe in CaliforniaWelcoming New Year with friends

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26

Ana VázquezSpain

My name is Ana Vázquez Lojo. I am a

45-year-old mother ofa child and I live in ACoruña in Galicia inSpain.

I am a trained speech therapistand occupational therapist, andI work in rehabilitation with deafbabies. Other roles I haveinclude President of the LeagueReumatolóxica Galega andPresident of the Official College

of speech therapists in Galicia.

I was eight when I

started getting pains,

fevers, rashes and

severe stiffness.

Those images areblurred with playing

games with my

siblings, laughing and

joking with my friends,

and school homework.

I was admitted to hospitaldozens of times and sufferedmany joint deformities andt

Documents

Eular Stene Prize Book 2015 Online