German TV item about Facial Infiltrating Lipomatosis, a PIK3ca Related Overgrowth condition - PROS syndrome, with Wilma Westenberg

Interview on German TV

Read in Nederlands

September 27, 2020 an item was broadcast on German television (RTL DE) about my life, rare condition and meeting extended family. It turned out to be such beautiful item! Most special is that they also recorded my meeting with Virginia from Germany. Thanks to this TV feature I found 5 new FIL patients from Germany. Some of them didn’t even have a diagnosis yet, but recognized themselves in my photos.

Op tv bij Explosiv RTL DE_recording interview at home
Recording at my home: mom, gran and I crocheting together

Invitation via Instagram

July 2020 I received an email from RTL DE reporter Anne. She had read my story on Instagram and wanted to make an item for a German program called Explosiv. For this program she regularly travels around the world for impressive stories. My crochet career, rare condition and meeting extended family all over the world seemed very suitable for the program.

Wilma Westenberg with Anne Saha from RTL DE
With Anne Saha

Virginia from Germany

As with many of my FIL meetings, it’s incredible how everything fell together. Anne asked if I had a meeting planned so they could join and record it. A few days earlier I got in touch with a German girl via Instagram: Virginia. Turned out we live quite close to each other. Usually I have to fly to another continent, now I only had to drive a few hours..

Op tv bij Explosiv RTL DE_100k youtube subscribers unboxing silver play button
Unboxing my Silver Play Button (award for reaching 100,000 followers on YouTube)

2 recording days

On Monday August 17th 2020 they came to my home in the Netherlands for an interview. My parents and grandmother were also present. The following weekend we went to Germany to meet Virginia. Hours of material were recorded, but they shortened it to a 6-minute item.

The item was broadcast several times on Explosiv starting on Sunday, September 13th. You can watch the item via this link (in German).

Op tv bij Explosiv RTL DE_meeting virginia
Interview with Virginia in Germany

I'm Wilma (26) and I was born with a benign tumor in my face. For 22 years I did not know what it was. In 2017 I did a second opinion and got diagnosed with Facial Infiltrating Lipomatosis; an ultra rare condition with only a few people affected world wide. On my blog I share updates about my life and take you with me on my journey to meet extended family around the globe.