By Kay, Brooke-Spiegler syndrome, United States, March 29, 2021
Hi! My name is Kay Pierce and I have Brooke Spiegler Syndrome, BSS.
In 1997, I was 17 years old when I first noticed my first bump. The bumps grew to various sizes and spread to cover parts of my scalp, face, and ears. For years, I was stuck at square -1. I didn't know anything about my condition, I didn't even know the name. All I did know was I inherited this rare skin condition from my mother. She also had it and she went her whole life, not knowing what it was. She had gone to see a specialist who did a biopsy on her when I was 8 years old. The specialist was of no help and was completely clueless about her condition. She is the only one of 13 kids in her family who has it and I am the only one of her 3 kids who has it.
I went through life being stared and pointed at, given disgusting looks, laughed at, was called ugly to my face, and been denied the qualities of life that most people look forward to in their early adulthood. I was depressed, stressed, and had suicidal thoughts most of the times I got picked over, discredited or denied what I knew I was qualified to have in life. I never attempted to wear makeup because I didn't know if it would make my skin worse, To this day, I'm still trying to figure out how to properly apply it. I didn't want to meet new people, I didn't like to go anywhere in public, or take any family photos. I didn't go to any of my kids' school funtions in fear of embarrassing them or setting them up to have to answer the inconsiderate why and what questions about my face from their peers.
It wasn't until 2014 when I reached out to The Doctors tv show, when I learned that the bumps were actually benign tumors, and my condition does have a name. The Doctors helped to restore my hope and mental health by helping me to undergo some much needed laser treatments to have some tumors removed from my face. For the first time in over 20 years, I felt confident and beautiful again.
I have learned that Brooke Spiegler Syndrome has been around since before 1842, it is caused by a mutation of the CYLD gene and is part of a Triade of tumors that includes: Cylindromas, Trichoeptiheliomas, and Spriadenomas.
It wasn't until 2018 that I laid eyes on someone elses story on tv about having the same condition and in 2019, I decided to become an advocate for those with rare diseases. I am now the founder/CEO of a nonprotit organization called Finally Clear Foundation, Inc that helps raise awareness and support for those with rare diseases. It is my hope that BSS will finally find a cure to help save future generations from the mental and emotional stress and oppression that I have felt living with this disease. I am also hoping and fighting for that one day when treatments and needed perscriptions for all rare diseases will be covered in medical insurance plans worldwide.