Into the spotlight

By Sarah RaparoliLex KlerenMisch Pautsch Switch to German for original article

The pandemic has an impact on the treatment of conditions that have nothing to do with the Corona virus. Two affected women talk about lack of solidarity, interruptions in care and their daily lives with a rare disease.

"I'm not at a loss for words, " says Anne Thoma during our conversation. Her demeanour leaves no doubt about it: the trained chemist is quick-witted, authentic and knows how to assert herself – even as a child. "I was called a cripple, hit on the head or pushed into the bushes. But back then I also fought back." Anne is approaching her 30th birthday, but if things had gone the way her mother was told shortly after she was born, she wouldn't actually be alive.

"At some point I was diagnosed with trisomy 13. I don't remember all of them, but each time it was a disease with a death sentence attached to it." After quite a few opinions and surgical interventions – which didn't make anything worse despite the wrong diagnoses – an appointment with a geneticist was due. "He diagnosed me with Arthrogryposis Multiplex Congenita, a congenital multiple joint stiffness. However, it's still not clear with absolute certainty whether that's what it really is." Further analyses would be necessary for this, but they are not a priority for Anne.

"I don't have to take any medication and I don't feel any pain.” She gets along very well with her weekly session with the physiotherapist. "I don't necessarily need a diagnosis to know if there is a therapy." Maybe in a few years she will have a different opinion, but for now her health is unvarying and her disease is not progressing, so everything else is secondary for her for now.

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