Author: Tina Kasap

Going through a rare disease as an individual, and as a family, is a uniquely challenging experience. This is especially true for rare skin diseases, which tend to be taken less seriously and labelled as ‘cosmetic’ issues. I wanted to open up about my family’s journey with Generalized Pustular Psoriasis (GPP), which ultimately took my father from us. It’s been a tough journey filled with confusion, frustration, and a sense of isolation that comes with dealing with such a rare and poorly understood condition.

For over a decade, we watched as my father struggled with a mysterious skin disease. It took over 10 years and several incorrect diagnoses, countless tests, countless hospitalisations and countless ineffective, and at times harmful, treatments to arrive to the GPP diagnosis. The worst part? Even after we had a name for it, the healthcare professionals in charge of his care did not know how to tackle this rare condition, leaving us feeling helpless and alone.

Living through this ordeal was incredibly tough, especially as a family member watching your loved one suffer. We felt like we were on our own because GPP is so rare. It’s hard to describe the sense of isolation that comes with knowing that very few people understand what you’re going through. Losing my parent to GPP has left an unfillable void in my life. But I’m sharing our story in the hope that it will shed light on the challenges of rare diseases like GPP and the critical need for more awareness and support.

Five years after losing my father, I had an unexpected opportunity to engage with the GPP community through my work. A whole new world opened up for me, and I was able to meet other patients and their families, as well as healthcare professionals and advocacy organisations working tirelessly to improve the lives of GPP patients. I finally felt like I was not alone anymore. To anyone out there who’s dealing with GPP or supporting a loved one through it, please know that you are not alone either. Reach out to organizations like EUROPSO—they can connect you with a community that understands. Together, let’s continue advocating for those affected by Generalized Pustular Psoriasis.

Photo by Brittani Burns on Unsplash