From Isolation to Action: Survivorship and Advocacy in Switzerland
- Abdominal Cancers Alliance
- Jan 7
- 2 min read
Updated: 3 days ago
By Antonia Dyroff
Zurich, Switzerland
The Challenge of Diagnosis and Isolation
For many, a diagnosis of Pseudomyxoma Peritonei (PMP) is a life-altering event that changes one's world overnight. Upon discovering a large appendix tumor within the abdomen—a circumstance that seemed unimaginable—I underwent two major surgeries to remove the tumor and to manage the disease. Each operation presented a fierce physical and emotional battle, followed by a recovery process that was both lengthy and challenging.
During this critical time, I searched for a community that understood the reality of living with PMP, but I initially found nothing. There were no self-help groups, no community forums, and no dedicated spaces to share experiences or ask questions. The resulting sense of isolation was overwhelming.
A Mission of Hope
While I eventually discovered Facebook groups that facilitated global connections, I realized a significant gap existed for patients in Germany, Austria, and Switzerland (the D-A-CH region). Driven to provide a solution, I founded a specialized Facebook group titled Mut im Bauch – AC/PMP Netzwerk D/CH/A. This network was created specifically for people in these countries to share their experiences and offer mutual support. To further strengthen this community, I partnered with Selbsthilfe Zürich to establish the "Pseudomyxoma Peritonei (PMP) und Appendix Karzinom (AC) - Video-Selbsthilfegruppe". We meet online every three weeks, providing a safe environment for conversation and mutual encouragement.
Additionally, we launched a dedicated website in 2012 with help from Bernd Grouven. The website is now managed by Romy Roscher and I actively assist Romy in maintaining and improving this site to ensure patients and their families can easily access essential resources and join our community.
The growth of this network has been bolstered by the support of my surgeon, Dr. Perparim Limani, who now serves as the Head of General and Visceral Surgery at Kantonsspital Aarau. Dr. Limani is a strong advocate for raising awareness about PMP. His commitment to patient care is invaluable; he helps connect me with other PMP patients and offers second opinions to those seeking expert guidance. This medical advocacy has been instrumental in building a robust support system.
The Mission
What began as a personal struggle has transformed into a broader mission - to raise awareness and build a strong support system for everyone affected by PMP. It is my firm belief that “no one should face this diagnosis alone.” Thank you to everyone who assisted me along my journey of survivorship and advocacy.
Community Resources and Support Groups
Facebook Group: 'Mut im Bauch – AC/PMP Netzwerk D/CH/A' — A dedicated space for patients in the D-A-CH region to connect. Online Meetings: In collaboration with Selbsthilfe Zürich, our video support group meets every three weeks to share experiences.
