"My life changed from one day to the next"

In January 2017, I suffered a brain hemorrhage (hemorrhagic stroke) caused by a cavernoma. My life changed from one day to the next. Before my stroke, I ran my own business as a consultant, coaching people in electron microscopy and X-ray analysis.

After my stroke, I found my passion for painting and creating. Art helped me heal. Additionally, I learned a great deal about my condition. During my rehabilitation, I worked at the office of the National Association for Rare Diagnoses, and in August 2018, together with other patients and relatives, I co-founded the association CASE.

I have completed several training programs for patient representatives to learn about drug development and clinical studies, through the European Organisation for Rare Diseases (EURORDIS) and the European Patients’ Academy on Therapeutic Innovation (EUPATI). Currently, there is no medication available for cavernoma—treatment consists solely of neurosurgery and the use of a gamma knife. Our association collaborates with numerous researchers and other cavernoma patient organizations worldwide. In Europe, we established the network “European Cavernoma Alliance.” Since August 2021, I have been working as a patient co-researcher at GPCC/Gothenburg University.

What Matters to Me:

• Increased patient involvement in research, as well as at organizational and strategic levels in healthcare
• Enhanced knowledge-sharing and mobilization
• Earlier diagnosis and better coordination for patients with rare diseases
• Person-centered care
• Sharing my knowledge with other patients and relatives
• Stroke prevention and support for self-care
• Actively listening to diverse patient and caregiver perspectives, especially "weaker" voices, to better represent our community