March 2022 I was featured on a very popular tv show in the Netherlands. I talked about my rare condition, finding others and my crochet business. Here you can watch my item on YouTube.
Interview on German TV
September 2020 an item was broadcast on German television about my life and meeting extended family. Thanks to this interview we found 5 new German FIL patients!
On Dutch TV: ‘You Cant Ask That’
Last March I was on national television in a program called You Can’t Ask That. I was invited to talk about living with a facial difference and answered many questions people might have.
We got married in Las Vegas
November 30th was our big day: Koen and I got married in Las Vegas! Everything went as planned and the weather was great. We were surrounded by our parents, sisters and extended family from San Diego.
We bought a house!
Koen and I bought our very first house! We’ll stay in the same area as where we live now, which is close to Koen’s work. We both preferred a newly built house and fortunately for us there’s plenty of choice here as they’re building many new residential areas. They will start building our house in…
Unexpected good news: a new medicine shows good results
Thursday was a special day for me and all the people (and their families) that suffer from an overgrowth syndrome caused by the PIK3CA gene. A new medicine has been tested on patients with a similar condition and show very promising results.
Traveling around the world to meet people with the same condition
One month ago I shared my story about getting diagnosed after 22 years of searching. At the end of my post I mentioned I’m in a Facebook group with people who have the same condition.
Diagnosed after 22 years of searching
For more than 22 years I have been living with the consequences of a visible tumor in my cheek while I did not even know what I had. And I can tell you, it feels very lonely to be ‘the only one in the world’ with this rare condition and unique appearance. I gave up…
We are engaged!
After 9 years it’s finally official: Koen and I are engaged! Last Thursday Koen went on his knees during our flight to New York. Of course I said yes! I really didn’t expect it at that moment and still hardly can’t believe it!
We’re going to the United States!
Finally, 2018 has started! A year that promises to be exciting with many changes I am looking forward to. Also regarding traveling. We often get asked: ‘and, where will your next trip go to? Do you already have new travel plans?’. After months of preparations I can finally tell you our plans: in 2018 we…
I quit my jobs
Hello all! It has been a while since my latest blog post. Time for a personal update! I have some super exciting news to share. As of January first I quit my jobs to start for myself. Next year I will focus full time on designing crochet patterns and running my blog(s). This is work…