Today I want to share something very personal I have never really talked about before. Not that it’s a secret or anything; I just didn’t really have a reason to share my story. In this blog post you can meet the maker behind wilmade.com!
Born with a tumor
I was born with a benign tumor in my face. For more than 22 years doctors did not know what it was exactly. They had never seen it before and said I was the only one in the world as far as they knew.
I have had surgeries when I was younger but the tumor came back immediately. There is nothing they can do. I’ve had a rough childhood with the tumor growing faster as I got older, but against all odds the last 6 years the growth has been stable. The future remains a big question mark.
Less than a year ago (2017) I did a second opinion. Against all my expectations this new team was able to give me a diagnosis: Facial Infiltrating Lipomatosis, an ultra rare condition with worldwide only a handful of people affected. But still, this meant I wasn’t alone anymore after 22 years!
I immediately started searching online for other people with this rare condition. So far I have found 20 people in the whole wide world. We stay connected through Facebook and share pictures and experiences. It’s amazing how many similarities we have and how much we look alike. I consider them as my new ‘extended family’. Coming years I want to travel around the world to meet many of my new extended family.
Join me on my journey
My life is changing so fast (in a positive way) and it’s all so exciting! All these life changing events also have an impact on my crochet journey, which I will update you on soon!