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Wilma and Virginia (33) in Germany - Facial Infiltrating Lipomatosis, a PIK3ca Related Overgrowth condition - PROS syndrome

My meeting with Virginia (33) on German TV

Read in Nederlands

1 of the 2 special meetings in 2020 was with Virginia. We got in touch via Instagram this summer after she saw my photo with Jaycee.

No diagnosis for 33 years

Virginia didn’t have a diagnosis, but when Instagram showed her my photo with Jaycee, she immediately knew it was the same condition. We chatted for a while and discussed all the rare similarities we have. Virginia has had more than 10 surgeries already. After our conversation, she immediately arranged a biopsy to officially confirm the PIK3ca mutation (which causes FIL). I’m so happy she finally got some answers after 33 years of not knowing anything.

Extended family living nearby

Only a few weeks later I already got to visit her in Germany. Usually I have to fly to another continent, but Virginia lives near Hildesheim which is only a 3 hour drive from Osnabrück where my parents live. Really nice to have ‘extended family’ living so nearby. As soon as corona is over, she will visit me in the Netherlands. 🤗

Our meeting on German TV

Our meeting was recorded by a camera crew from RTL DE. Something different than my usual photos and videos taken on my phone. 😉 After our item was broadcast on German TV, we found 5 new people with FIL. Crazy, right? The item was broadcast in September and you can read more here.

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.