Hi! My name is Wilma, I’m 25 years old and live in the Netherlands, Europe. I was born with a rare condition and after searching all my life, I finally got diagnosed in 2017. At age 23, I was diagnosed with a PIK3CA related overgrowth condition (PROS) called Facial Infiltrating Lipomatosis (FIL). I’m affected in my face and like many of you will understand, I have to deal with daily questions, whispers, pointing fingers, etc. When I was growing up, I always felt alone.
As soon as I got diagnosed, I started searching on Google. Fast forward two years later, I now have an ‘extended family’ with more than 50 people who have FIL. It’s so surreal to see many people that look just like me after being alone all my life. My husband and I love traveling and we try to visit as many people as possible. So far I’ve met 13 people in different countries.
I was so happy when I found out that the Four Leaves Clover book features a character with facial overgrowth. CLOVES Syndrome Community gifted me a few copies of the book to share with other people with FIL. I’ve had the pleasure to gift this special book to two of my little ‘sisters’ when I met them in September of 2019 and I can’t wait to tell the story to more of my extended family next year.