BaRiE – A special way of drawing attention to inflammatory rheumatic diseases

Admittedly it’s a bit late to be reporting on our biking tour from Brussels to Copenhagen since the adventure ended more than 2 months ago. But what with a busy private life and illness-related fatigue nothing came of it until now.

But better late than never and here is my personal account of the extraordinary journey upon which 74 bikers embarked in order to put inflammatory rheumatic diseases under the spotlights.











Ria Scheiba

Day 1: Brussels – Hasselt, Saturday, June 6th

A mixed team of patients, doctors, health care professionals and volunteers set -off from the European Parliament in the centre of Brussels on June 6th, almost on time at around 09.45 am.
And what a spectacular sight that was: a wave of blue & yellow cyclists – the majority on tandems and special bikes – and the whole back-up crew with trucks, vans, medical support vehicle, the bus and our two valiant motor cycle escorts heading out of town!











Mercifully the weather was good, a bit on the cool side and breezy too, but no rain.

Under the watchful eyes (lenses) of the press and accompanied by the applause of politicians – first and foremost the Belgian Minister of Health, Mrs Laurette Onkelinx – as well as many personalities of public life and our supporters, “Biking against Rheumatism in Europe” 2009 got underway.

Despite a head-on wind we reached Tervuren, our first short stop, right on schedule. Not much time to hang around, just enough to say “hello” to the mayor and then we were on our bikes again towards Leuven, ancient university city and well-known for it’s big hospital the “Gasthuisberg”.

That’s were we were heading for – and for lunch, of course.

The “team of hope” had done wonderfully well on these first 30 km of mainly uphill riding. It is by no means easy for such a big group (74) to stay together, get into it’s stride, bike in harmony, stay mindful not to lose the severely disabled ones and get to the destination all at the same time.
But we did it, with a lot of enthusiasm and all in good shape!

We got a warm welcome from the staff of the clinic, local and provincial dignitaries and our friends from different patients’ associations; there were speeches galore.

Flemish TV covered the event and family and friends were able to watch us in action, which, of course, we could not since we had to be on the road again for the afternoon ride (30 km) to Hasselt along the Albert canal.

It was a lovely trip on a proper cycling path: flat, secure, away from traffic and easy – until some of the able-bodied boys & girls decided to have a little race, patients or no patients up-front or behind – and that really put a tremendous amount of pep into the whole expedition. It was a lot of fun!
While up until now police escorts had been accompanying us on motorbikes, the Hasselt police had sent us 2 handsome lads on bicycles! Very befitting.
















We stayed on Belgian soil for the night, had a superb supper at the hotel and were in excellent company – what more do you need to call it a perfect day?

Day 2: Hasselt – Hoenderloo, Sunday, June 7th

57 km to bike on this first day in the Netherlands.
Contrary to what the forecast had announced, the weather was dry and pleasant, except for the strong blustery wind blowing straight into our faces.
Oh, but what a treat to ride our bicycles on these Dutch cycling lanes: broad, well-kept biking highways. It was free riding and one could catch-up with people up front or drop back to see what was happening at the tail end of the line. There was a lot of laughter and singing too.
These are the moments to relax, have a good chat with your co-bikers, enjoy the scenery while all the time being on the move for a good cause. Fantastic!

For some reason or other this was the day of “pino fever”. Jan and Piet had it and Marleen and Chris were also affected.

A pino tandem is an ingenious contraption with a lower front seat, allowing both cyclists to have a full view of the road and surroundings (unlike a normal tandem where the rear seat rider gets a splendid view of the front driver’s back).
Admittedly, when seen from the front it looks as if the patient were being shipped around in a wheelbarrow. But that’s only an optical illusion!








It’s really fun to ride a pino and for the severely disabled patients it is the only way to bike and take part in the adventure. It takes some courage to sit in the front seat because, being unprotected and without a safety belt you depend entirely on the driving skills of the back seat partner. At times, when going fast or downhill, it’s quite scary because the whole landscape comes rushing at you, or so it seems.
I know what I am talking about because I had the privilege of riding the pino two years running, last year with Herman, and this time round with Erwin, both very experienced cyclists.

Since Jan was dying to try -out the pino, Erwin stepped down and let him have the commander-in-chief seat of ours.
By that time Marleen and Chris were already happily cycling along on another one of these extraordinary vehicles.

We were heading for lunch in a restaurant….. which inexplicably was closed (Sunday) but fortunately had left tables and chairs outside. Since we were self-sufficient, it didn’t matter. Out came the StarMeal packages (courtesy of one of our big sponsors) and we sat in the sun and enjoyed the picnic.











Piet got his chance when after lunch Erwin and Jan decided to quit biking and go for a run instead. Excess of energy, I guess.
My lucky day: 3 men on my bike! Something to remember!

Bikers and runners had started together but the runners outdid us and arrived ahead of the crew at the next stop. The whole group normally travels at a speed of about 15km/h - so the boys must have been running in top gear!

Still 8 km to go before our double-decker bus would pick us up and take us to the hotel in Hoenderloo.

At this point in time we weren’t certain that the weather would hold – and sure enough it didn’t. The rain was pouring down heavily on the courageous cyclists but could not wash away the good humour and cheerfulness that had invaded the whole group.


Completely drenched we arrived at the end of the stage only to find out that the bicycle transport vehicles had lost their way temporarily. While the majority of the group went to sit in the bus, some very brave and intrepid volunteers stayed behind in driving rain to guard the bicycles until transport arrived.

But nobody ever complained – and no one was ill either. Just goes to show what determination and commitment can do to put a project through.

Oh well, you’ve got to take the rough and the smooth when on a mission like this!

Day 3: Hoenderloo – Eutin, Monday, June 8th

The only trace of yesterday’s rain were a few droplets on bushes and flowers now sparkling in the sunshine. Thank God we didn’t have to worry about the weather this second day in the Netherlands. There were enough other worries to come later on, as it was.

There was a long day ahead of us and therefore we had to get up at the crack of dawn. We would have loved to stay at breakfast indefinitely because it was yummy but since the bus was leaving at 8 o’clock there was no time for lingering.

33 km further on our cycling tour began at the church of Warnsveld/Zutphen. Our friends from the “reuma” patients’ association of Zutphen had turned out in force to welcome us there. They hadn’t expected such a large group of cyclists and were in awe. Such a big happy family zipping across Europe on bicycles to raise awareness about inflammatory rheumatic diseases was something they had never seen before.

The whole idea of the project appealed to them. We had made a big splash – just like we wanted to.
We also got quite a bit of attention from the local press (see articles on the Flemish page of this website).

It was high time that we got going. T-shirts were handed out in exchange for mint sweets (typically Dutch and very refreshing) and off we went in the direction of Haaksbergen.
Like the day before, biking was pure delight.











Ingrid Visser, representing the Regional Council, came to join us (on her bike) at one of our scheduled refreshment stops in a beautiful place with an old watermill called Borculo. She was very happy to become a temporary member of this merry Belgian biking group and afterwards said that she would never forget this unique experience.

Day 4: Eutin – Køge, Tuesday, June 9th

Eutin is a charming little town in Northern Germany, between Lübeck (South) and Kiel (North). Apart from the lovely family hotel we were staying at and the Kellersee right at the foot of the See Schloss hotel we didn’t see anything of it.

The sun was out early in the morning, but that was too good to be true. It couldn’t last and it didn’t.
The misfortunes of some are often the good luck of others.

Since Jean-Paul and Fabrice had to catch -up on their sleep the start was set for 10 am, a luxury much appreciated by all.
That was the easy part of the day: out of bed and via the breakfast table on to our bikes which were aligned for us smack in front of the hotel.




The press was in action: interviews at breakfast and photos at the start. The town of Eutin had sent its chargé d’affaires for tourism. At the end of his welcome/ farewell speech he gave us some good advice - to be quick and bike away in front of the rain. We tried, but it didn’t work and the bad weather caught -up with us double-quick.
Even on our way to the first stop (after 7 km) where we met with a delegation of the Deutsche Rheuma-Liga, it was already raining moderately.

But the German welcoming committee had been clever enough to set -up a waterproof stall so that we could have a little snack under a roof of sorts.
Nobody was bothered by the weather and soon there was a lively multilingual discussion under way between our German friends and those daring, slightly crazy Belgians who had come that far north already on their bicycles to ride inflammatory arthritis into the limelight.

We hope we have given our German friends a bit of inspiration in how to fight arthritis, stay active and be adventurous at the same time.
We left them with ample information about our project and a stack of yellow T-shirts. As a farewell present we each got a darling little cloth bag filled with goodies for the road and then we were on our bikes again.




By that time it was raining hard. No matter, the team felt strong and actually continued biking for another 18 km! That was very brave of us but it was also all we could manage. The terrain was hilly, difficult and slippery. The wind was strong, the rain relentlessly pouring down and temperatures were dropping. It would have been insane to go on battling against the elements. So it was agreed that we stop.

Wet as we were we went to a very posh restaurant in the shape of the huge German hired truck, parked in front of a shopping centre, which had been hastily converted into a diner by Sabine, Monique, Françoise and Caroline, complete with tables and benches! Utter luxury! But we had to take turns because there was not enough room for all at the same time.


It was absolutely necessary to get into dry clothes as quickly as possible. So the whole bus was one big changing room!

The good thing about the bad weather was that we were able to catch an earlier ferry from Puttgarden to Denmark. At about 5 pm we had already checked-in to our hotel in Køge! Something unheard of before!

We went out to dinner that night to a really cosy place not far from the hotel. Dr. Hanne Slott Jensen, the EULAR local committee’s chief coordinator for biking events, met us there and we had a wonderful evening together. The food was superb.

Thanks to the undisputed talent of Marie-Jo (our CEO and mother of the family) for finding the right places to go we always had delicious meals and excellent accommodation the whole trip long.

Day 5: Køge – Copenhagen, Wednesday, June 10th

Well, here we were on our last day of biking together against rheumatism, close to Copenhagen but not there yet. But only another 41 km to go and we would reach our final destination: the Bella Congress Centre.

The weather was quite acceptable, at least in the morning: we had a mixed bag of sunshine and clouds and still yesterday’s strong wind.

Since it was an easy ride into town, we started out at 10 o’clock from the hotel’s doorstep.
Thanks to the organisational skills and efficiency of Dr. Hanne Slott Jensen, the Danish coordinator of biking events, everything had been arranged for the biking Belgians. She had mobilised the members of the Danish patients’ association and the press, got politicians interested, even persuaded the Danish Minister for Public Health to come, provided police escorts and managed to be everywhere at the same time.

Regionsrådsformand Kristian Ebbensgaard sent us on our way with a wonderful speech – in Danish – which was received with thunderous applause.
Quite a few representatives of the Danish patients’ association had come to join us so that an extended team took to the road again.





I wasn’t much impressed by the route towards the Bella Centre. We cycled on the main road under the protection of 2 police motorcycle riders plus our own (Arnaud and Guy) so we didn’t have to worry about traffic. But this last leg of our tour held no special interest, except that we didn’t pass unnoticed. The advantage however lay in the many parking lots which we used for our regular stops. A lot of “family” photos were taken on those occasions as a souvenir not only for us but also for future BaRiE generations!

For the very last time we “StarMealed” together in yet another parking lot, 4 km from the conference centre. Our sponsor had provided us with such a huge amount of lunch portions that, despite our best (international) efforts, we could not finish them. What was left over was donated to a shelter for homeless and needy people in Copenhagen.

Eating and chatting away with our Danish friends we enjoyed the rare rays of sunshine while we waited for Mr. Jakob Axel Nielsen, Danish Minister for Public Health, who had promised to come and bike with us on the last leg to the European Congress of Rheumatology. He was as good as his word and arrived on time and in a proper biking outfit for rainy days, which was very wise because at take-off we got a free shower again.

The rain blew over and when the team regrouped for the last time, off came the blue rain-vests and we crossed the finish line in our striking yellow T-shirts.

We got a fantastic welcome from the EULAR, the Belgian delegation, and our friends attending the congress.
Sadly, this year there was no triumphal arch at the finish. Every time we pass through one we feel like winners which, of course, we are because we have won an important victory over the illness.

Mission accomplished!
After 5 days of cycling across 4 countries in Europe we had brought our expedition to a successful end. All the participants had made it to our final destination. There had been no major accidents, we had lost no one on the way, nobody had given -up and all were in good health when we arrived in Copenhagen - although the effort had taken it’s toll and some of us (including me) were utterly exhausted at the end of the tour. Yet it was worth all the effort and trouble – and it had been fun too.

“Belgian dynamite” as Piet calls the BaRiE team, certainly did not cycle unnoticed across Europe. In every country we went through, people were impressed by the strong bonds of friendship, solidarity and mutual respect that hold the crew together. “Together we are strong” is our motto and standing side by side in fighting inflammatory rheumatic diseases brings strength and courage and that is the recipe for the success of the “team of hope”.

When the official part of the reception was over and doctors and nurses had left us to attend the congress, a somewhat smaller BaRiE team hopped on their bikes again.
We still had things to do that day. So we speeded off to the Town Hall Square in the city centre, guided and protected by the Danish police, to visit the extraordinarily beautiful, interactive and informative exposition called “LEARN”.










(Links to expo www.learnexpo.info. and song www.learnexpo.info/download.htm.).

It was at Erwin’s invitation that we went there and we enjoyed every single moment of the visit.

Our hotel wasn’t far away from the exposition and we arrived there in style – on our bikes, of course! We had no police escort anymore and had to brave the Copenhagen traffic alone, but we were shielded by all our transport vehicles, Géo Sécours, as well as Guy and Arnaud on their motor bikes. It was quite an adventure but we made it – unscathed.


There was more to come because that evening we were invited to the famous “Belgian Night”, the Belgian rheumatologists’ traditional gala dinner, organized by Dr. Xavier Janssens in the Aquarium of Copenhagen.

We had had a full day and this was a very pleasant end to it.



This year’s awareness campaign à la Belge has been a tremendous success. But we will not rest on our laurels. Next year we will be “Biking against Rheumatism in Europe” again – this time all the way to sunny Rome.
























Ria Scheiba

A message from South Africa

What a pleasure it was to join our Belgian friends on this adventure. Drawn together by a common cause we have swapped the comfort of our daily routine for this great quest to reach Copenhagen by bicycle.

Like any adventure this one is filled with heroes. The heroes of our adventure are not the classical type. They are not armoured and muscled, do not slay dragons or save maidens and do not feature in headlines or legends. Instead they are quiet and humble, fighting a silent but savage battle to overcome the odds that they have been dealt. They may have damaged bodies but their spirits are not broken.

Cycling from Brussels to Copenhagen is a huge challenge for all of us. The challenge is obviously mostly a physical one, especially those in whom rheumatic diseases have caused pain and disability. There is another challenge though.

The challenge for us is to look at the bravery and persistence of our patients and colleagues and to try to apply these qualities in our battle against these diseases, whether we are patients or healthcare workers.

We have come from South Africa, a country full of suffering and hardship, but also of heroes. We would like to invite all of you to come to our shores for a visit. Not only to see our beautiful country, but to meet our heroes and maybe even to lend them a hand.

Chris Scott

Ria Scheiba, patient, participant, co-organizer

For the last 2 years I have been actively involved in the organization of these memorable Joint (Ad)Ventures of Belgian rheumatology and this year will be no different. The first time round in 2007, I didn’t dare go biking with the team all the way to Barcelona because of rheumatoid arthritis (RA). The last thing I needed was a fall off the bicycle. So I stayed at home which was boring and frustrating since I had done so much work helping to organize the trip up front. So last year, I let myself be persuaded by Marie-Jo, our CEO, to actually go with the team to Paris on a bike! But what sort of bike since I couldn’t cycle alone anymore? A “pino” tandem was the optimal answer to that question: it’s an ingenious construction which allows the patient to recline in the front seat (and pedal if he/she wants to) while the able-bodied partner propels the contraption from the back seat.

Last year, Herman was expertly riding our “pino” to Paris but this year he has been promoted to chief path-finder and can’t be seen trundling along with a patient. He has got to be independent and at the head of the team because he knows the itinerary by heart and will lead us safely to Copenhagen. Someone else will have to be the back-seat-driver. For me “biking against rheumatism” to Paris was a revelation in many ways many ways. First of all, there was the reassuring feeling of solidarity. The surrounding team constitutes a strong safety net. And secondly, all patients – even the severely disabled ones amongst us – made it to the final destination. A perfect illustration of our motto: “together we are strong”!

Curiously enough there was never a complaint from the patients’ side. Nobody wailed or whined about their illness or discomfort. Of course there was the occasional remark of: “my legs are all done-in” or the request for an anti-inflammatory drug or someone saying the medicine had caused loss of hair. Nothing more! No real grumbling or complaining. Mysteriously, just for that lapse of time that the troop is on the road, the disease recedes into the background, or so it seems. So yes, this year I will go cycling again with this extraordinary team of bikers I have been managing from behind my computer. But one thing after the other: we are still preparing for take-off on June 6th.

The BaRiE organizing team is a bunch of very dedicated, enterprising and enthusiastic volunteers who will get everybody safely to Copenhagen and back home again. We are actually working on the project every single day! Marie-Jo sometimes has nightmares about it but she also has her dreams.

It is by no means simple to organize such a big dynamic event which has become very popular indeed. Everything has got to be put into place and it’s got to be right!

So we spend our days mailing, phoning, networking; contacting sponsors, VIPs, celebrities; drafting documents, rushing around to printers, negotiating for free vans, trucks, busses, bikes, tandems, trailers; informing participants; more mailing & phoning, constructing our website, arranging meetings, drafting minutes, collecting logos selling “support cards” and managing our families plus keeping the illness at bay!

Compared to this hectic life it’ll be pure delight to just hop on our bikes and ride to Copenhagen!

However, for patients it will be tough to cycle all the way up north to wonderful Copenhagen. But here lies the challenge: we want to prove to decision makers, the medical world, the media, the general public and – last but not least – to ourselves that it is possible to defy the disease, to stay physically fit and professionally active, provided there is adequate treatment and support.

Meanwhile, I am back on my home trainer (courtesy of Herman who has these things lying around in his attic) to get some exercise. It would be a shame to have to give-up halfway through the trip because of poor condition. After all, we want to arrive in Copenhagen all together and in good shape.

Ria

Quentin, the youngest patient of the group (9 years old)

Copenhagen? For me, Copenhagen means Legoland. I have never been there but I have a passion for these coloured Lego bricks!

The Trets ? It is in the garage since Brussels-Paris. I had to stop swimming as well. My only sport is virtual (Wii) these days...

My disease? Even if I can't run, my joints are doing better these days, thanks to the medications. Due to glaucoma and uveitis, my low vision and my major photophobia became a real handicap.

At school? I do my best but I am quickly tired and I can hardly see what is written on the blackboard. My teacher and friends help me a lot: it allows me to attend a normal school.

My brother? Theo is now 6 years old. He broke his nose at school. We play all the time together (Wii, Pokemon, Monopoly).

My motivation for Brussels-Copenhagen? Have a chance to see Legoland and have fun! I need to ask my teacher if I can join because it is a school week...

Help families and children with Juvenile Rheumatoid Arthritis

Life becomes a daily fight when one of your children is ill. JIA can be a hidden disease or a heavy handicap, but it always means suffering. The whole family life must be adapted and it is always difficult for the children, including brothers and sisters, and their parents.

My motivation? Show JIA to the world, help families to meet and find solutions to their daily problems, give people hope and show that life is still worth it. Quentin is badly ill but his courage is remarkable. He never complains and always do the best he can.
Our hope? Share another great adventure with friends.

Alain Gilliaux, patient

“I’m taking part in this adventure to break out of my isolation. Thanks to the Association I have an opportunity to overcome my limitations. During the last 20 years I haven’t done any sports whatsoever and I have never travelled because of my disability…”

Patrick Durez, rheumatologist

“To unite and fight for recognition of inflammatory rheumatic diseases: how could this be done? The idea of “Biking against Rheumatism”, the project started by rheumatologists alone in 2006, has evolved a lot. With the cooperation of patients’ associations in 2007 we have developed this crazy project to bike together from Brussels to Barcelona to attend the European congress of rheumatology. Then we went to Paris in 2008 and now on to Copenhagen in 2009!”

André Van Bosbeke, patient

“If only I could cycle again! But nothing much was possible any more except a few hundred metres at most in a wheelchair or on foot. A sharp and biting pain, caused by RA (rheumatoid arthritis), made virtually everything impossible. Biking was too dangerous because of the risk of falling. But what if the bike had a third wheel? Nowadays, I am training at quite a high level on my Super Trike, a tricycle weighing only 13 kg. Biking against rheumatism got things moving; even if life stays an every day fight, at least it’s become more bearable.

Luc De Clercq, rheumatologist

The EULAR congress biking trips are always a special adventure, particularly the human relations side of it. We are a very diverse group of people: patients, nurses, physiotherapists and rheumatologists, young and old, French- and Dutch speaking …. Super atmosphere on the bike as well as on the bus! My special thanks to everyone who has helped to make all this possible.

Arsène M'Penza, patient

“The trip was simply marvellous! Absolutely super! I met other people who have the same problems as I have and I feel less lonely and much stronger. Together we did it!