About Me

My name is Wilma Westenberg, I’m 32 years old and the person behind wilmade.com.

I’m from the Netherlands, and although I spent most of my teenage years living in Germany, I now live in the Neder-Betuwe (the Netherlands) with my husband, Koen, and our two little Pomeranian fur babies.

At the age of 21, I finished my Master of Science in Communication and New Media at the University of Twente. After working for two years in PR and communications, I decided to leave my office job and focus full time on my crochet business.

The blog that started it all

I started my first personal website when I was just 12 years old. I loved making websites and was looking for something meaningful to write about.

Growing up, I was asked the same questions about my face several times a day whenever I went out in public. So I decided to put my story online once and for all.

If someone asked me, “What’s that on your cheek?”, I could simply give them my website.

At the age of 15, my website was nominated for the Gouden @penstaart, a Dutch award for the best website for children made by children. In 2010, I won the award.

Winning changed a lot. Suddenly, I was invited to take part in all kinds of projects, including advisory boards for big companies and organizations such as Randstad, Kennisnet and ECP. I also was asked to give a TED Talk in Amsterdam.

I never expected that a little website I started as a 12 year old would lead to all of that.

Finally, a diagnosis

For most of my life, I had no idea what caused the differences in my face. I grew up being told that I was probably the only person in the world with it.

In 2016, I went for another opinion at an expertise centre in the Netherlands. I wanted to know whether my condition was hereditary.

The doctors had never seen anything like it before, but one doctor decided to look into my case and help me find some answers. She went through the medical literature and, based on everything I had described, including the problems I had experienced with my teeth, came across scientific research about Facial Infiltrating Lipomatosis (FIL).

She diagnosed me with FIL.

Honestly, I never thought I would get a diagnosis in my lifetime.

And suddenly, I had an answer to a question I had carried with me for years. I also finally learned that my condition was not hereditary.

My crochet journey

Little did I know that, just as I finally found the answers I had searched for all my life, the universe had more in store for me.

In December 2014, I taught myself how to crochet because I wanted to make little Christmas trees as a hobby.

I quickly became obsessed and, in April 2015, I created an Instagram account to share my crochet projects.

On January 1, 2016, I started wilmade.com, where I began sharing my own crochet patterns.

What started as a hobby slowly turned into a business. By January 1, 2018, my business had grown enough for me to quit my job and work full time as a crochet designer.

Looking back, the timing couldn’t have been better. My crochet business gave me the freedom to work from anywhere, allowing me to travel and start meeting others with FIL.

Finding FIL Family

The moment I had a diagnosis, I started searching online for other people with FIL.

I found Josie, whose mum had been writing a blog about her life. We connected, and she introduced me to a few other families around the world.

At that point, I was the only adult.

Our little community slowly grew, with a few new people joining every year. Today, we have found 150+ people with FIL around the world, including 20+ adults.

I grew up thinking I was the only one in the world. So finding other people who looked like me was very surreal.

It became my mission to find others and, whenever possible, meet them in person.

My husband and I have always loved traveling, so it turned into a perfect combination. Over the years, I have travelled to Canada, the USA, Brazil, Turkey, Japan and across Europe to meet people with FIL.

I might never have visited these places or met these wonderful people if it weren’t for this journey.

FIL Meetings

In 2019, I joined HEVAS, a Dutch patient organization specializing in vascular anomalies and related conditions.

Being part of HEVAS has allowed me to learn so much more about FIL, connect with medical professionals and other patients, advocate for our community and attend conferences around the world, including ISSVA, one of the largest conferences in the field.

It also gave me the opportunity to organize the first international FIL meetup in the Netherlands in March 2024.

With support from HEVAS and funding through a subsidy, I was able to bring our community together at an amazing location by the Dutch coast. We had hotel stays, delicious food, fun activities including a huge indoor swimming pool, and four doctors who gave presentations on different FIL related topics.

A year later, in May 2025, I organized the first FIL meetup in New York.

I spent years believing I was the only one.

Now I get to help make sure that others don’t have to.