Dancing with Bechterew’s disease

Leo, a 30-year-old choreographer and dance maker, suddenly suffered pain that was initially dismissed as a harmless injury or strain. But the pain worsened, and Leo felt doctors were not taking her seriously. One doctor even claimed that she could no longer dance professionally. Leo was frustrated because the person she was talking to seemed to have little understanding of her dancing career. She began to wonder how it was possible to cope with her situation.

“I just often felt like I wasn’t being taken seriously there, what I was actually saying.”

Morning exercise became a challenge as Leo felt stiff and was in pain. She tried to perform gentle movements to relieve the stiffness. Physical activities such as swimming, Pilates and doing her own exercises helped her stay mobile. On an emotional level, writing and sharing with friends, both about her condition and other issues, helped her.

Leo sought rheumatological treatment from Dr. Spiller. An MRI scan showed significant inflammation in the sacroiliac joints, although no clear changes were visible on x-rays. The diagnosis was nonradiographic axial spondyloarthritis. Therapy was based on two pillars: Exercise therapy and drug therapy. Physical therapy was recommended to maintain spinal mobility. Drug therapy targeted inflammation and was based on subjective assessments by the patient.

Leo advises others with the condition to talk to others early on and to be open about their condition. Contact with like-minded people can be relieving, he says, because they share an understanding of their situation.

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