Sisters Defeat Dystonia: Hope Through Deep Brain Stimulation!

Sisters Defeat Dystonia: Hope Through Deep Brain Stimulation!

The sisters Nele (22) and Jette (18) R. live with a rare disease, generalized dystonia, a neurological movement disorder. This leads to involuntary muscle contractions, which can range from mild muscle spasms to severe distortions. If left untreated, the disease can lead to wheelchair dependence, which significantly limits the quality of life. In Germany, around 160,000 people are affected by dystonia, with two main forms: generalized dystonia, which affects the entire body, and focal dystonia, which affects individual parts of the body, such as cervical dystonia.

Nele had her first symptoms in elementary school, which manifested themselves as tension and internal rotation of her left foot. The family searched for a long time for suitable treatment until they finally got it Hannover Medical School (MHH) reached. Here, both sisters were offered deep brain stimulation (DBS), a therapy option in which electrodes are implanted in the brain, over ten years ago. These electrodes emit electrical stimuli and modify brain functions, which is particularly beneficial in cases of dystonia.

The role of deep brain stimulation

Professor Dr. Joachim Krauss, the director of neurosurgery at the MHH, is considered a pioneer in the use of DBS and first introduced this method at the MHH in 2005. The MHH team has since performed over 200 DBS operations for generalized dystonia. Jette had her brain pacemaker inserted at the age of seven after experiencing symptoms similar to Nele's. Regular follow-up care with Professor Krauss not only shows the medical aspect, but also creates an emotional connection; the sisters maintain a friendly relationship with their treating doctor.

Studies, like one of the Charité – University Medicine Berlin, have further investigated how DBS works. In an analysis of 80 patients, it was found that the optimal placement of electrodes and activated brain networks depends heavily on the specific form of dystonia. This particularly refers to the primary motor cortex, which is crucial for motor functions. Findings from such studies could help to refine the treatment of dystonia and make it more individual.

Everyday life and future of the sisters

Despite their illness, Nele and Jette lead an active life. Nele is studying computer science, while Jette is preparing to take her Abitur next year and study midwifery. Jette is passionate about hip-hop dancing, while Nele is enthusiastic about weight training and also enjoys skiing and mountain biking.

The disease dystonia remains a challenge, but advances in treatment through methods such as DBS enable those affected to significantly improve their quality of life. The stories of Nele and Jette are inspiring examples of how a self-determined and fulfilling life is possible despite serious health impairments. In this regard, research such as that carried out at the Bonn University Hospital continues to be crucial in developing new therapeutic approaches and improving the living conditions of people with dystonia.