Convention registration reminder


Has your member group registered for the LUPUS EUROPE convention yet? Remember that the deadline for special conditions is 15th June 2016.

The convention will take place in the beautiful historical city of Würzburg, Germany from 28th September – 2nd October 2016. It is also an important occasion for our hosts, the German Lupus association, who are celebrating their 30th anniversary, a cause for great celebration!

We have a full programme of events as well as our council session and trustee nominations. Two trustee positions are up for election, so if you, or anyone in your national team, are interested in joining LUPUS EUROPE’s Board of trustees, please apply. Renewing trustees is essential to an organisation’s growth and efficiency. If you have considered becoming a trustee but are unsure of what it involves, don’t hesitate to get in touch with the secretariat or any of the trustees for more information. We can all be contacted at our email addresses which are made up of our first name followed by (e.g.

More information about the convention is and will be available in the member section of our website at this link. If you are having trouble logging in to your member area, please get in touch with the secretariat.

We look forward to seeing you in Würzburg!


Running with Germany

This week Andreas’ is running with the German Lupus association who are celebrating their 30th anniversary this year – and hosting our annual LUPUS EUROPE convention as part of those celebrations. Click the flag to see more.

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Reminder EPF survey on quality healthcare


What does quality of healthcare mean for you? Take the EPF survey!

Deadline: 31st May 2016

Quality of healthcare is at the heart of European Patients’ Forum’s work. EPF is conducting a survey which aims to explore the perceptions of patients about what “quality” means for them, and what matters most in quality of care.

Please note that you do not need in-depth knowledge or experience on quality of care to complete the survey!

More information here.

World Lupus Day in France


This week, our marathon hopeful, Andreas is running for France’s two lupus associations. This is a great opportunity to highlight a couple of World Lupus Day initiatives taken by these two associations.

AFL + chair, Marianne Rivière, was interviewed for “pourquoi docteur”. You can find the full interview (in French) here.


Among other activities planned for World Lupus Day, the association, Lupus France, asked its members to take up a challenge and wear purple or orange (or in some cases both) for Lupus awareness. Here is the video of their contribution (although in French, the visuals are easy for anyone to understand).

Lupus France’s chair, Ginette Volf, was also interviewed for World Lupus Day. You can find a link to that video here (video in French – the segment about Lupus is from 2 min 36 secs).



In addition, here is a video, in English, filmed at Eurodis, the Rare Disease Platform, on the occasion of the press conference with Prf. Jean Sicilia,  Head of the National Reference Centre for Systemic Autoimmune Diseases and Miguel Sieler, CEO of Neovacswhich has developed a drug candidate against lupus., Professor Lupus France and Lupus Europe.”  With thanks to

Jeanette’s story


When I got my lupus diagnosis in 2011 I was a very active young woman with a teaching job and on my way to study for a PHD at Aarhus university. I have a master’s degree in German and Philosophy and I loved teaching. I used to be a fitness instructor during my studies and keeping in shape meant a great deal to me and my well being.

I have had many symptoms of lupus from as far back as the year 2000, but I never thought to connect all the elusive symptoms like hair loss, joint pains, headaches, fatigue and depression in one disease. My husband and I were on our honeymoon in Bali when I got my first real flare.

We had planned a guided tour around the island but after a few days I started having fewer. The fewer went up and down a lot, but since it was my only symptom and there was no doctor nearby, we went on with the tour. After four or five days I had the opportunity to see a doctor and he took a blood test and gave me antibiotics. There are no laboratories on Bali, so the blood test had to be sent to Java for analysis, which takes four to five days. While waiting for the results I suddenly one evening had difficulty breathing and my chest started hurting. I was rushed to the emergency clinic, which consisted of a small open room with chairs and tables for examination. It was mostly used for the many motorbike accidents with scrapes and bruises and did not have the equipment nor the space for a patient like me. They thought I had an asthma attack or maybe a lung infection, so they treated me with a nebulizer and antibiotics in IV, which did not help at all. I got worse and worse and was brought to a larger hospital in Denpasar, the capital of Bali. They took x-rays of my lungs and saw I had an infection, which they treated with more antibiotics. This did not help at all, however, and I got to the point where I passed out and was brought to intensive care. I was hooked up to a lot of machines, which monitored my vitals and alarms kept going off because my body was giving up. My attending doctor was convinced I had a bad pneumonia and just needed more antibiotics, then I would get better. From my wedding day I had had a horrendous headache and this only got worse while I was in hospital. Some very nice nurses noticed this and called in a neurologist to have a look at me. She was the first one to really have a good look at my body and she noticed I had rashes on my legs, arms, chest and face and she had an idea, what it might be, but didn´t tell us. She performed a brain scan and called a rheumatologist and he had one look at me and told my poor husband: “Your wife has lupus”. Of cause he had to take tests to be sure, but he was so convinced he was right, that he started me up in 1000 mg. of corticoid steroids. After only two hours my body started to respond to the medication and the vital signs very slowly returned to normal. My husband did not believe, that this serious episode could be caused by arthritis, but he borrowed a computer, went online to the Danish arthritis association’s home page and read about lupus and suddenly all my symptoms from the past 11 years made sense. While I was recovering new tests were made and they all confirmed, that I had lupus. It manifested itself in my lungs, my heart, my brain and my central nervous system. After two weeks’ time I was so stable, that I could travel back home.

My lupus has turned out to be quite aggressive, partly because of my late diagnosis, and today the illness combined with side-effects from the medication has left me walking-impaired and a lot heavier than before. I am no longer able to work-out like I used to and a chronic headache alternating with migraines means I am no longer able to work. Since I still have my good education and I really needed to do something meaningful in my everyday life, I started as a volunteer in the Danish lupus association in 2012. I found such satisfaction in this work, that I have taken on more and more work since then. In 2014 I became a working group member of EULAR Young PARE and last year I was elected into the LUPUS EUROPE board. By volunteering for these organisations, I have the opportunity to help other people with an RMD, while still taking care of my own disease by only working, when I have the health and energy for it.

Although SLE has changed my life from a very active one, with a fulltime job and a lot of fitness in my spare time to a condition, where I am immobilised in a wheelchair and can work only a few hours a week, I have found a new purpose and meaning in life, by helping other people with RMDs all across Europe.



A mother’s story

For World Lupus Day, Anne Charlet, vice chair of LUPUS EUROPE, was interviewed by MedTech.


When Anne Charlet’s teenage daughter complained of extreme fatigue, she thought it was just end-of-school year tiredness or anaemia.

But a precautionary blood test that revealed an unusually low platelet count led to a completely unexpected diagnosis several months later: lupus.

“It was all a blur, but I remember the medical staff repeatedly asking Amélie the same questions, which we thought were really weird at the time,” recalls Anne. These included: “Is your hair falling out?”; “Have you noticed any rashes?”; and “Do your joints ache?” among others. ….

To read the whole story, please click here.

Anne is a member of Lupus France



Kikka’s story

My Lupus story doesn’t start in 1993 with an SLE diagnosis, but eight years earlier in 1985, when at the age of 22 I got pneumonia for the first time. O spent two weeks in hospital with a horde of doctors around my bed wondering why antibiotics weren’t working. The oldest doctor mentioned that I may have a condition called LED (an old name for Lupus, still used by some doctors in Finland). At the time, it obviously didn’t mean anything to me, I didn’t look it up in a library, but it relupus finlandmained in my memory. Luckily, the antibiotics worked shortly after and I went home to recover.

The following year I was accepted to university to study English Philology, the history of language and culture and linguistics. My first one and a half years as a student were bliss, but then everything changed. I had pneumonia every other year and repeated bouts of bronchitis in between. That made me skip many courses but I was able to finish them later, when I felt better. In January 1993, I was in a middle of my teacher training when a persistent temperature took me to a university hospital for a couple of weeks, where I was diagnosed with Lupus.

Lupus explained the many symptoms I had been having on top of my lung problems. I had achy swollen joints, sun sensitivity, leukopenia, anaemia and red patches on my arms and legs. It was most active for 10 years, during which time I also had pericarditis twice and myocarditis once. Twice, a sudden rise of temperature where I developed pneumonia in a couple of hours and was taken to hospital in an ambulance.

Despite Lupus I had a child in 1995. Thanks to specialised neonatal care, I was able to give a normal birth to a healthy girl, who is now 21 years old. She has had no symptoms, for which I am very grateful.

Looking back now on the active period, the medication seems to have worked and I slowly recovered. I took cortisone for ten years, azathioprine and methotrexate for a while. The latter two didn’t suit me, but I think they did their job anyway, because my Lupus went into remission 12 years ago. In 2004 I was able to stop taking cortisone and my Lupus has remained dormant ever since. I took hydroxychloroquine during the ten active years too, but then stopped taking it. In 2012 I felt my Lupus may be becoming active again and started taking hydroxychloroquine once more. It may have helped and stopped an active disease flare up, who knows?

Although Lupus has been a pain in the butt and has created obstacles in my life and made life a bit more challenging, I have been able to do all I have dreamt of. I finished my studies in the end and took out both BA and MA degrees in English Philology, philosophy and teacher training. I worked for 16 years altogether as an English teacher, then I retrained in accounting and still have a job as an accountant. Another dream that worked out well was to have a child, and that happened too. She is the light of my life.

It seems I was one of the unlucky ones to get Lupus, but having said that, I also feel very lucky that my Lupus is dormant right now. No-one knows how it will go in the end and my Lupus may become active again, but I don’t want to think about that and so I live life one day at a time, doing things that interest me most. Lupus has taught me to be happy about simple things. Lupus has also introduced me to wonderful people around the world that I most probably would never have met. As I see it, having a chronic illness makes one enjoy and respect the good days and make the most of one’s life.

Kikka is a member of Lupus Finland – SLE-yhdistys ry






Katharine’s story

When it was first suggested that I write a patient story for Lupus Europe, I have to say that I felt a little uncomfortable. Firstly, I’m an intensely private person and have so far never wanted to write about myself or write a blog. Secondly my ‘lupus’ is relatively mild (in the medical sense rather than the ‘effect-on-life’ sense) and my diagnosis very mixed… it was then pointed out to me that I’m not alone in this and people need to hear that story.

My problems started years ago with the very easy and seemingly unimportant diagnosis of auto-immune hypothyroidism (Hashimoto’s) but although my thyroid problems were easily controlled with medication I still wasn’t well. As there is a history of auto-immune diseases including RA and Polymyositis in my family, doctors looked into it but blood tests can be very difficult sometimes and results came back with low positives for different things at different times, with nothing clear. A positive skin biopsy seemed to confirm the more lupus oriented diagnosis and so that’s what my problems were originally called even though I had some very strange symptoms for a lupus patient. In addition, my symptoms and blood tests indicated probable Antiphospholipid syndrome (though because of a lab problem this was never confirmed). Luckily that has never been a problem for me unless I forget to take my baby aspirin – I tried that once for a couple of weeks and I wouldn’t recommend it!

In the beginning it felt very important to have a name for my disease. Many years on, I have realised that things are not always that simple and, in some cases, it can be very difficult for doctors to be precise. Most people will ‘only’ have one diagnosis and that is more than enough but I think it is important for our doctors, especially generalists, to realise that things can be more complex.

At the time I was diagnosed, I had quite a lot of inflammation and the pain was stopping me from being very mobile or even walking so I was put on prednisolone along with Plaquenil®. Suddenly, I could walk again and, as a bonus, those strange ‘atypical’ symptoms also nearly disappeared. My life was far from normal but it was a lot better. Later, I was also put on Imuran® and my quality of life improved with fewer symptoms. My blood tests – which had become more precise in between time – improved and, after a few years, I was able to stop Imuran. I was also determined to stop taking prednisolone because of its significant side-effects. That was much more difficult and I failed repeatedly. In the end one of my doctors decided to try partially replacing my prednisolone doses with a small amount of hydrocortisone. In that way, I was able to stop prednisolone but during that time and the next two years I became ill again – blood tests and symptoms showed that it wasn’t a ‘lupus’ problem. My symptoms became severe but no-one could explain, and doctors repeatedly told me that nothing was wrong with me. I was sleeping 10-12 hour nights and taking 3-4 hour naps… and the only answer I got from doctors was that I was “making myself tired from sleeping too much”. I knew that I wasn’t choosing to sleep, instead, I couldn’t stop myself from sleeping, but I was too tired to fight anyone (this led to other problems where I should have fought administrative and legal issues as well). On top of the tiredness, my ‘atypical’ symptoms had come back.

Eventually, we discovered that something else had been hiding, something we are now sure I had prior to lupus – auto-immune Adrenal Insufficiency (Addison’s disease). All my doctors originally thought that my adrenals were having trouble because I had taken prednisolone (a common problem with high doses or longer term use) but no-one expected it to be a primary issue and a separate auto-immune disease. This delayed diagnosis. Suddenly all the ‘atypical’ symptoms such as severe nausea, low blood pressure and other ‘Addison’s’ symptoms were explained.

All in all, it took 11 years from my first Hashimoto’s diagnosis to the last of Addison’s. Some of those years were better than others but now I am doing much better with proper treatment for my Addison’s in addition to my maintenance treatment for connective tissue disease.

Being diagnosed with chronic illness can be a very distressing process but, because I grew up with a mother who has Polymyositis, I wasn’t terrified of it (despite my mother being told, 35 years ago, that she had five years to live – she is doing very well by the way). I am also lucky to be more fascinated by such problems than frightened of them. This has helped me to understand but also to be interested in improving things in a practical way for others when I can.

Of course, I grieved the loss of my job all those years ago but I then realised that there were things that I had always wanted to do but had never had time for. I started to do more photography than I had, and spend some time writing, both life-long passions.

I can now work a little again. I also volunteer, both in Lupus Europe and at the local dog club. I am no longer able to ride horses (once my profession) but have found a new hobby – sheep herding – which takes me out into nature, where I can think of nothing except the animals I’m working with.

I find sports very difficult to do because the repetitive movements don’t suit the chronic tendinitis I have nearly everywhere but I walk a lot with my dogs and cross fields to work the dogs with the sheep, feed the sheep and look after them. Staying active can seem very discouraging at first but I think it’s very important not to give up and to find something that you enjoy (and that your joints allow). If you enjoy it, you are much more likely to push yourself a little and keep going. I know that if I wasn’t as active as I am, I would feel my joints more and have less endurance and more tiredness than I do so I feel it is just as important as my medication – which I take without fail. I am also lucky to have ongoing access to physiotherapy which helps me maintain a level of suppleness that I may lose otherwise. It also helps pain a lot.

The other day my generalist had a new doctor working with him and he asked me what advice I would give her. I said that although people like me are relatively rare, it’s essential not to put all symptoms in one ‘basket’ just because the patient already has a serious diagnosis such as lupus. By doing that, my Addison’s was missed for years and made me very sick, meaning I lost almost two years of ‘living’. Happily, I am now very busy making up that time!


Katharine lives in Belgium and is a member of the Association Lupus Erythémateux





Anna’s story


I met my Lupus on a sunny day of April 2003 when I was 23 years old.

A year ago, I was hospitalized because I fainted with seizures. At the time, the doctors told me that anyone can have such episodes once or twice during their life. However, a neurologist in training thought that I was suffering from Multiple Sclerosis so I went through a lot of blood tests and other examinations, until my diagnosis was confirmed. It was early Spring. Everything in nature was colorful and vivid, but my body was going to have a “roommate” for the rest its life. My doctor told me that I didn’t have MS but “Systemic Lupus Erythematosus”. “What is it? What do I have to do?”, I asked naively. “If you follow my instructions and have a healthy diet, everything is going to be o.k.”, he said. Unfortunately, my lupus was more aggressive than we could imagine at that time.

It started with intense epilepsy. I had several seizures, one after another. I felt like I was dying and reviving, over and over. I had pain all over and it was very hard for my family to watch. I had to quit my job. Eventually, after a lot of drugs, my epilepsy started to stabilize.

Two years later, my lupus decided to attack again. Myositis! My whole body ached. I couldn’t walk, I couldn’t comb my hair, I couldn’t even get dressed! 40 days in hospital, many drugs and a biopsy which confirmed that my muscles were affected. I was desperate! My fiancé was understandably anxious about our future. At the same time, my kidneys were affected too! That made things even more difficult. Yet more new drugs and a lot of nights which passed by with me watching drug infusions drop by drop. I had to learn to walk again, like a little child, one step at a time. I was so weak! During this period, doctors and nurses stood by me, always with a smile. I was their “Barbie” because of my pink pyjamas and my colorful blanket which they always let me have. During those years, I had several infections, most of them indefinable. I was prone to almost everything! That flare lasted for about two years. There was an ongoing problem with my CPK, which was always high! New prescriptions and new restrictions followed. I was always a disciplined patient, like a soldier. Every word the doctors said was law for me. Finally, with a lot of trying, many prayers and a strong will for life, we managed to get my flare under control.

Two peaceful years followed until the end of 2008, when I got pregnant for the first time. So much happiness, so many dreams and then, in the seventh week, I had my first miscarriage. Tears returned to my eyes again but this was a different pain. Another try five months later and I dared smile again. I was pregnant for a second time but unfortunately that pregnancy also ended, this time at nine weeks. Five months later, I was pregnant for a third time and I went through the most painful experience so far when I gave birth to a still born baby in the seventeenth week. I wanted a baby so much! I wanted to see my husband happy! After four months, we decided to try in vitro-fertilization with pre-implantation diagnosis in order to increase our chances. We were defeated again in August 2010, in the ninth week of my pregnancy. I was crying non-stop, my heart was broken! I couldn’t stand seeing babies and it broke my heart when I was invited to children’s birthday parties.

All these bad thoughts provoked another lupus flare, the worst so far. Summer of 2011, I was exhausted even by a tiny effort. I had a severe cough and I was breathless. This time I had pulmonary fibrosis. I was devastated. No, it couldn’t be true. My lupus was slapping me again and again, stealing my oxygen. I couldn’t even speak! My doctors were insistent: chemotherapy! I refused because I really wanted to have a baby. I asked for alternative medication. That led to a lot of prednisolone and many hospitalizations. My spirometry result started to improve from 18% to 25%, even 35%. I was happy and ready to try again for a baby, despite the high risks. On April 2013 my fifth pregnancy ended in the eighth week and my dream went away. My fibrosis got worse and I finally accepted chemotherapy. My doctors prescribed me injections in order to protect my fertility and even though I was terrified, I started. It was really hard for me to accept my situation and I started to suffer from depression. I didn’t want to see anyone, I cried non-stop and I lost a lot of weight without controlling it. I decided that I needed to see a psychologist. Right from the very first visit, she made me see things differently, she was really helpful.

Since October 2013 I have been on Cellcept® and things are getting better and better! My spirometry result is up to 60% and my doctors are proud of me.

Over these years, I have learnt to love my lupus, despite so many difficult moments. I know that I need to relax and be as happy as I can. My lupus has made me strive to always try my best. We live together in the same body. When I am content within myself, it is reflected in my body. I have been lucky to receive so much love and tenderness from my doctors, nurses and everyone who is involved. I have learnt from all this that we should always be positive thinkers and never give up. After all, what counts in life is not how many times you fall, but how many times you get up!

Anna from Greece

Anna is a member of the Hellenic League Against Rheumatism – El. E. AN. A









Yvonne’s story


My story – by Yvonne from the Netherlands

On 6 July 2004, I woke up with a tremendous pain in my right hand. Because I also had a slight rash, my GP immediately referred me to a dermatologist. He examined me and referred me to a rheumatologist because he had a hunch what might be wrong.
Fortunately, my rheumatologist was not only very friendly, but she also immediately knew what to look for. I gave blood and a urine sample and after a few weeks I got the answer.

It turned out I really had a disease, but whether that made me any wiser? I had Systemic Lupus Erythematosus. What sort of disease was that? Had anybody ever heard of that? I got a leaflet explaining what lupus is, what it is like to have it and what the symptoms can be. I started reading the leaflet, but chucked it away halfway through. I suddenly dawned on me that I had a chronic illness, an illness that couldn’t be cured. That I would never get better, that things would only get worse and that I might even die from it. I really didn’t need to see all that confirmed in a leaflet. However, after a couple of days/weeks, I picked up the leaflet again and started reading it in a different way. Although it listed all the things that could be affected, this mostly didn’t apply to me at all, so things seemed not too bad after all. Okay, I had lupus, but with the right medication I could live with it.

After a couple of months, I gradually returned to work. I was still processing all the new information and trying to accept the fact that my body was betraying me. Especially in the first few years, I fought against myself and my body. I was constantly testing my boundaries and crossed them fully and forcefully, refusing to accept the fact that there were certain things I was no longer able to do, or not in the same way as before. I was determined to show my body who was the boss! Painkillers are wonderful: I took at least two a day at first and up to 11 later on. They allowed me to go on/work as usual until I could no longer cope even with those 11. I had to admit defeat: my body had won again. I had to recover at least three weeks before I could gradually return to work. This fight took a number of years but eventually the penny dropped and I managed to find my balance. Especially when, after four years of being subborn, I thought I didn’t need sun protection and had another flare-up as a result.

Acceptance is hard, in particular because your body sometimes seems 40 years older than you are. Accepting that your body is betraying you is a kind of grieving process: you say goodbye to the body you once had and have to get used to another body instead, one you don’t know yet. You don’t know what to expect and that takes time. I was lucky that I was able to keep my two jobs, with some adjustments.

Eight years after being diagnosed with lupus, I had a mild heart attack. Was there a connection with lupus? Yes, posssibly.

Two years after this, I ended up in hospital again following months of terrible stomach pains without any clarity about what caused them. I had a very bad year with three bowel infarctions. Apart from being a lupus and heart patient, I was now also diagnosed with APS. Yet another set-back with major consequences – I have been declared fully incapacitated for work – but also a new challenge.

Looking back on the past few years, I know that I have changed, that I have had to give up a lot, but also that I more often put my own interests first. Some people find this selfish.  Going out for an evening during the week? As little as possible, because I can’t cope with that anymore. It is only possible if I rest a lot in the days before and after. Getting up early? Only if strictly necessary; I really do need my sleep and rest. Going to a party? Only if it is really fun and I really want to go. Otherwise I don’t think it is worth the trouble of going to bed early an entire week in advance and spending the next day flat on the sofa.

So I make more conscious choices. In retrospect, the wheelchair, which I refused initially, gave me a lot of freedom. I wish I had accepted it earlier. I can’t work anymore. That is a pity, but at the same time it also a relief. No longer having to get up while not 100% fit and doubting whether to report sick (again) or try and go to work. Now, such a day is simply a day on the sofa. Unfortunately, this also means I sometimes have to disappoint people, that some people don’t understand and that I have lost “friends”. But am I unhappier now than in 2004, when I thought I was healthy? I don’t think so.

I live differently and more consciously. I am more aware of my body and of the choices I make and how the disease fits into my life. I know who and where my friends are. I have eliminated people who have not been there for me from my life. Of course I am sometimes angry or sad, exceed my boundaries and ask myself “why me?”, but that is okay, that is only human. I am happy with my way of life. I have been able to give lupus a place in my life. I have learnt to listen to my body and to realise that my body is usually calling the shots. Even if I have an incurable disease, this does not mean that I won’t live to 100 and that I can’t enjoy life.

I am who I am. I am Yvonne and I have a chronic illness: lupus/APS.

Translation: Petra Bernards

Yvonne is a member of NVLE – Nationale vereniging voor LUPUS, APS, Sclerodermie en MCTD




Claudine’s story

For World Lupus Day, we have collected a few patient stories which we hope you will enjoy. If you have a story to tell, feel free to get in touch and send your story to! All stories will remain visible on this page of the blog.

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My life with lupus – living to the fullest – “Don’t stop me now” by Claudine from Belgium

‘What did you do last night?’ I asked myself when my alarm clock went off in the morning.  And to clarify, I had done nothing special during that night.

But like every morning I wake up with the headache, the flu-like feeling and the rigidity of my body. The usual stuff, like I always tell my husband when he asks me how I am. But this time it felt as if I had run a marathon. I hadn’t J.

I knew this was coming.  My wolf had warned me with his subtle signals.

‘You’re going too far, you are ignoring me too much’. He admonishes me with his finger in the air. And I know, I realize it. But it remains so attractive to be able to keep up with everyone. Without being stopped, without being slowed down.

After a few minutes I pull myself out of bed. Everything goes very slow. I find it difficult to think, to move and to breathe. ‘I’ll have to be patient with myself today’, I mumble quietly.

In the distance I hear the voice of my son Lenny.  And at the end of the staircase, he is waiting for me with his arms wide open.  I feel so blessed. His big hug creates the first miracle today.

At our breakfast table I close my eyes while I enjoy the scent of my coffee. Hmmm…this is another blissful moment.  And a big smile appears on my face. Because my sandwiches with sprinkles that I’m making will taste so good with my coffee.

My mobile beeps and in a blink of an eye my face brightens up. It is a text message from my daughter Lisa. She is on a school trip this week.  Her message makes me laugh. I miss her terribly! I can’t wait to see her again and to take her in my arms.

In the background I hear the song “Don’t stop me now by Queen, with the ever-inspiring Freddie Mercury. It is still one of my favourite bands.

I turn up the volume of the radio because it’s a great song, it’s exciting and it makes me incredibly happy! Really, you can’t stand still on that song, can you?

And the small dance movements that I’m making, also help the stiffness in my body.

I sing along with the song:

“Don’t stop me now…”

“I’m having such a good time, good time…”

‘Uh, good time? ‘ I think to myself. No, not really no.

However I’m singing all the air out of my lungs.

Absurd, isn’t it?

You know, in my mind I’m not sick, on the contrary. In my mind I’m unstoppable.

I read once in a newspaper: “Look more into your talents and less to your limitations.” That’s wisely said. Often we are too much focused on the things that we can’t do. And it inhibits us.  Because, it is mostly our thinking that limits us.

Although my lupus is still quite active, I feel this fire inside me that can’t be diminished. So I had to find something that I could do with my talents and within my limits. Something that made me feel useful again. Something that I could do at my own pace.

A couple of years ago I started writing about my invisible illness and I share it in my blog It creates more awareness and more understanding about living with arthritis, living with lupus. And the most beautiful thing about sharing these little parts of me is that I’m also helping and supporting other patients.  And this still gives me a lot of warmth in my heart.IMG_0025_2

And that feeling, helping others with my experience as a patient gave me the impulse to do more.  So now I have become a patient-partner in research and a patient representative. I’m so happy that I can contribute and speak up for those who are temporarily unable to.  I can hardly describe in words the powerful energy when we are working together in a patient panel or at a convention. Putting our hands, our thoughts and our energy together.  United we are changing the world into a better place for patients with arthritis. It gives me so much mental energy and friendship in return.

There was a time when I used to postpone the things I wanted to do.

Because of my illness…But now I just do them! So I’m learning to play the piano and I love it. It stimulates my brain again.  And recently I’m into yoga. It helps me to regain strength. And during the drama classes I’m learning to express myself again.

And all this makes me feel so alive again.

You know, I am aware of my sick body, I am aware of my ‘limitations’.

Every morning I get up with my wolf fur. And every day I scan my limits.

What I can do and what not. What will work today and what will not.

It is what it is…

But besides being ill and having daily pain, I experience also very beautiful, intense moments of happiness.  Even if they are only fractions, a few hours, it doesn’t matter.  I’m especially grateful that I’m experiencing them.

My focus is on the things I can do, not on what I can’t.

And even though my wolf often tackles me in all my enthusiasm…

Even if I tread my path with much trial and error.

It will certainly not stop me to follow my heart and to do the things I’m passionate about. It will certainly not stop me to be intensely happy too.

Don’t stop me now…

You are right Freddie.

Show must go on!

That’s the spirit ;-).

Claudine Goyens is a member of CIB LIGAUnknown



And he’s still running… GO Andreas!

Here are a few pics from runs Andreas has taken part in so far…


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And, once again, a new post has been added to Andreas’ page. To read all about what he’s been doing so far, click here.


Events May-June-July


10th – World Lupus Day “Lupus knows no boundaries”. Special online events global campaign Please go to for further information.


11th May – EPF Access to healthcare workgroup meeting in Düsseldorf. Katharine Wheeler attending.


8-11thEULAR Congress, London, UK. This year LUPUS EUROPE and LUPUS UK will share a stand in EULAR Village. LUPUS EUROPE is represented by Chair Kirsten Lerstrøm and Treasurer Kirsi Myllys.

15thdeadline for registrering to LUPUS EUROPE Convention 2016, Würzburg, Germany. Also deadline to nominate your candidate to the Board of Trustees elections. 

24-26th – LUPUS EUROPE Board of Trustees meeting.


29th – deadline for submission of your stories for the WAD2016 campaign “The Future in Your Hands”. Let us have many good lupus experiences represented! More information here.

World Lupus Day is just one week away…


The World Lupus Federation which encompasses the LFA, LUPUS EUROPE and other world Lupus organisations, has set up a website specially dedicated to World Lupus Day. On the site you can find out more about different activities throughout the world, download a Lupus toolkit and sign the petition asking for lupus to be made a priority for the WHO (World Health Organisation).