Uncertainty as a constant companion

By Christian Block, Lex Kleren Switch to German for original article

Patients with rare diseases often spend years searching for the correct diagnosis — in many cases without success. For those affected, a stressful situation in many respects. The first national action plan promises improvements. Even if the work on its implementation has lost pace in recent months, according to those involved.

The Scheidweiler-Darné family is far from accepting their situation. “It is still our goal, also because Abby wants it that way, to find out what it is”, says Julie Scheidweiler-Darné. Together with her husband Mike, the family with four children has been searching for the right diagnosis for a good ten years, almost since their daughter was born. “It’s a little annoying because I don’t know what I have. The other children keep asking me what I have, and then I still can’t answer”, says the ten-year-old herself.

It all started when she was about eight months old. “As an infant, she never reached the sitting position”, the mother recalls. Children usually reach this stage between the ages of four and six months. At first, the parents were told not to worry too much, as every child develops slightly differently. But during the eighth month of life, the situation is changing. On the advice of the crèche, the parents contact the ‘Service de Rééducation Précoce’. The suspicion that it is a matter of an abnormal development was confirmed. “Shortly afterwards, she became ill quite quickly, regressively ill”, reports Julie Scheidweiler-Darné. Abby, sitting next to her at the dining table, listens attentively.

“It was a bad time”

Talking, drinking on her own: things Abby had already learned, but suddenly could no longer do. At a certain point, the child could no longer hold her head upright and was also “extremely tense”. The pain made Abby cry constantly — from April to July. Looking back, that was the worst period for Julie Scheidweiler-Darné. “No one knew how to help her, neither we, nor doctors, nor anyone else”. “It was a bad time. This constant uncertainty. Because no one knew what she had, no one could tell us how things would go on, uphill or downhill”, adds her husband.

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