Born with rheumatism: Jana's long battle against pain

In principle, she walks on clouds. But her knees still hurt like hell, at least on some days. Jana Gerber is wearing jogging shoes with thick air cushions in the soles when we meet her for a walk along the banks of the Rhine. From the outside, you can't tell how much the disease has already taken its toll on her joints. The 17-year-old seems cheerful, talks straight from the horse's mouth and jokes around. A bright, self-confident young woman.

Jana suffers from juvenile idiopathic arthritis. This is a special form of Paediatric rheumatism, quite rare, and in her case means: severe pain in the joints without knowing what the actual trigger is.

As a six-month-old baby, Jana came back from holiday with a constantly reddened and thick knee. She baffled doctors from all over the world. «A baby with rheumatism? Hardly anyone could have imagined that back then,» says Jana.

The first attempts at treatment therefore came to nothing. Or they led to even more pain. In a first attempt, her knee was forced into an extension splint. Little Jana screamed for five days. Then the splint finally came off again.

Paediatric rheumatism and psychological pain

An assistant doctor finally had the decisive suspicion. However, even after the diagnosis, there was no fully suitable treatment. This is the fate of many children when they suffer from a little-known, rare disease. Before something can be treated or even cured, you need people who already have experience of how to treat such diseases. This requires research. And that can take time.

After a few years, Jana thought she had got the problem under control with cortisone. But then the pain in her other knee returned. A bitter setback. And life wasn't going to get any easier for Jana any time soon.

She was teased at school because she couldn't do everything in sports. «You're just faking it,» claimed a few smart alecks in her class. «Don't act like that!»

Even today, not everyone is as understanding of her situation as she would like. Some people seem to think that what you can't see doesn't exist. «Having to constantly justify why something isn't possible,» says Jana, «that's actually almost what hurts me the most.»

She really has to endure a lot. Her illness is chronic. That means it's always there. Jana constantly needs medication. There are also relapses. From one day to the next. «Then you can't use me any more,» says Jana. Do something with friends? School? Work? - Everything then becomes Mission Impossible. No day can be reliably planned in advance.

«Fortunately, my boss is fully behind me,» says Jana. She is doing her KV at Baselland Cantonal Hospital. She would actually have liked to become a physiotherapist. But that's just it. The illness. She is very vocal in deciding what Jana should become.

Against all odds

Not so long ago, things actually looked very good. «When I was 15, my doctor, Dr Andreas Wörner, gave me a clean bill of health,» says Jana. But then her father passed away. And just a few months later, the fingers on her right hand suddenly started to hurt. From then on, it was clear that she would need drug therapy for an eternity. «It's possible that a traumatic experience like my father's death reactivates the illness,» says Jana in a matter-of-factly analysing tone, as if she were her own doctor.

There seem to be kilometres between her and her illness when she talks about symptoms, medication and setbacks. Here, on the one hand, is Jana, who gives it her all at work and, when she has time off, trumpets away with her Gugge without any knowledge of music: «You just need enough breath, that's the whole secret!» - And then, on the other side, there is the illness that plagues Jana but can never take away one thing: her personality.

It is this distance that allows her to laugh at her own fate on good days. «Of course it had to be my trumpet fingers that suddenly hurt,» says Jana and grins, «it's logical.» Nothing is going to knock her off her feet any time soon.

Jana has learnt to live with her illness. Basically, she is almost grateful that the illness was there from the start. «It's certainly easier than suddenly being torn out of your normal life by something like this,» she says.

Her positive approach to the disease is impressive. «I just tell myself: whoever decides which child is born with an illness - this something ensures that it affects those who are strong enough to deal with it.»

Jana sighs. She has fought for this attitude all her life. It is her heartfelt wish that she can keep it.