Her HS started when she was 13 years old. She has many atypical locations witch made her diagnoses take 18 years. She has been an international HS advocate since 2018 , and a volunteer for the Dutch HS patient organization since the end of 2020. She does monthly Facebook lives on several HS topics, and has an international network within the HS community. She is also a Phage therapy advocate, a possible treatment for HS in the future. She works with dermatologists and scientist on studies for this treatment in the hope to give HS more and safe treatment options.  Learn more about Phages here.