We’re excited to introduce the SpArrow Project, aimed at raising awareness about Axial Spondyloarthritis (AxSpA) and improving patient referrals to rheumatologists.
About the Project:
Two years ago, Novartis started this initiative to highlight AxSpA and streamline referrals. An artist interviewed four patients with AxSpA patients to create four paintings vividly showcasing their experiences.
Raising Awareness:
Novartis also launched a social media campaign and held educational sessions with GPs to enhance their ability to identify and refer AxSpA patients.
Charity Event at the BCR Congress:
These exclusive artworks will be on display at the entrance hall booth of the congress and will be auctioned to the highest bidders, with all funds raised going to the KBVR-SRBR’s scientific research fund (FWRO-FRSR). Don’t miss your chance to own a piece of this impactful project!
The four winning bidders will be announced at the gala dinner and will take their painting home on Friday!
How You Can Help:
Your support will advance rheumatology research and raise awareness of AxSpA. Displaying these paintings can also help educate your patients and colleagues about the impact of this condition.
More about the paintings and the patients
Moving equals breathing, don’t take that away from me – Celine : 39 years old.
I was used to my muscles feeling slightly tired and stiff after running. This pain was quite different anyway. Maybe I had made a wrong move with all that lugging during the move? The strong pain shot from my left to my right buttock. Was something dislodged, hitting a nerve perhaps?
I am sure it will go away on its own, I am only 21, I will recover quickly. But no, the pain worsened sharply. Thousands of knife wounds in my buttocks and a crippling feeling in my upper legs. At that point, the likely diagnosis was an overuse injury. Things improved for a while but the pain returned more and more violently. Further investigation was done. An X-ray revealed a deformed spine. By wearing a corset day and night, my column would grow straight again and the pain would disappear. I bravely wore the corset, but the pain remained.
For almost 3 years I received numerous diagnoses, the most painful « it’s in your head. » I had to give up running; I could swim a little. I was diagnosed with Axial Spondyloarthritis (axSpA). Now – almost 20 years later – I am enjoying life again, training for a marathon and even leaving soon for a cycling vacation.
Back pain without cause – Alexandre : 23 years old.
I was only 16 when I developed back pain for no reason, as if out of nowhere. The pain lasted a few days and then disappeared. After weeks, sometimes months, it was suddenly there again, that flaming pain, like a bolt of lightning. A shudder from my heel to my crown. For no reason. I was only 16 and had a lot of anxiety, what is this, why is this happening to me? I no longer dared to play with friends, going to school was a drama. It was thought to be growing pains, « you have to go through it and once fully grown it will be over ». I could no longer put my feet on the ground and only sat on the couch. This couldn’t go on like this. It took a while to get the right diagnosis : Axial Spondyloarthritis (axSpA). Not a pleasant message but clarity and finally understanding.
There are still attacks of strong pain and unfortunately I never know exactly when lightning will strike. This does make me anxious, but I understand my body much better and know how to act. Since getting the right diagnosis, my life has improved immensely anyway.
Always so tired – Evelyne: 34 years old
You must tighten your arm very hard then I can cling to you, for I can no longer walk. Suddenly the crippling contraction was there again. Out of the blue, while I was walking with my love through the city. For years I had had frequent and severe pain, all over my body, like millions of needles piercing all my nerves. Around my 20e the vague symptoms began. I was so tired that I had to stop my studies temporarily. No clear diagnosis was found except some burning spots on my back. The pain, which kept appearing like a devil in different places in my body, was hellish. The fight so exhausting. One diagnosis followed another, until the most painful one followed « it’s in the mind, you are not actually missing anything. »
At work, the glowing hot choco fell from my trembling hands. « Now enough is enough « said my dear colleague who recognized the symptoms. After more than 14 years of struggle, pain and frustration, the correct diagnosis finally came. Today, I am learning to cope better and better with Axial Spondyloarthritis (axSpA).
I am mom of 2 sweet kids with a fine husband, just back from ski vacation. This one was still on my bucket list!
Back pain with small children? That’s normal – Marian : 53 years old
My shoulder was once again on fire. The pain flowed like a trail of smoldering coals to my lower back. A flaming sensation kept me awake at night and in the morning I was stiff as a board. Treatment at the physio gave some relief but did not address the cause, the red pain remained. According to the doctor, all young moms are tired, muscle tension from carrying small children is normal.
The pain manifested itself in more and more places in my body; I was constantly dazed. Due to the lack of sleep, I had lost myself. The pain flared up at the strangest times, and in the different places in my body.
It became increasingly difficult to do my job properly. The bouts of pain came more and more regularly. There was still no diagnosis. Years later, the correct diagnosis was made. It turned out to be inflammation caused by Axial Spondyloarthritis (axSpA). There was already significant damage to my joints.
I have learned to distribute my energy well and now work very happily as an artist, sculptor. This chronic illness has also brought me something, I live at my pace and on my terms.
