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Traveling around the world to meet people with the same condition

Union station Washington DC - traveling around the world
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.

In less than one year the group has grown to 20+ people with the same condition living all over the world. I’m going to combine this positive change in my life with my passion for traveling and visit my new extended family!

Most people live in the USA, followed by Europe on a second place. There are also people living in Canada, Brazil, Colombia, Porto Rico and South Africa. Till now we haven’t found people living in Asia, but hopefully they will also find their way to our online community one day soon.

Most people in the group are mothers with (young) children. Besides me, there are two more grown-ups with this condition. I’m sure there are more grown-ups in this world with this condition, but they probably have not been diagnosed yet just like I didn’t have a diagnosis for the last 22 years. Most doctors do not even know about it as the condition is so rare and only newly defined.

My travel plans
Koen and I are in the USA till the second week of April. Accidentally three people live very close to where we are staying, each about a 3-hour drive. Also, coming two weeks Koen and I are going to make a big round trip through the USA by train which we will combine with meeting two families.

When I’m back in the Netherlands, I would love to visit some families who live in Europe this summer. Next year I’m going to try to visit my extended family in Canada and Brazil. After that we will have to see what’s possible and who we can meet. It depends on which flight deals will pop up and how many days Koen has left to take off from work.

I will take you with me on this journey and try to share some more updates about the amazing people I get to meet!

Our round trip for the coming two weeks

I am Wilma (23) and I was born with a rare tumor in my cheek. For more than 22 years I did not have a diagnosis. Thanks to my website visitors I ended up at the Hecovan working group where I did a second opinion in 2017. Here I got diagnosed with Facial Infiltrating Lipomatosis (FIL); an ultra rare condition with only a few people affected worldwide. On my blog I share updates and take you with me on my travel adventures around the world to meet my 'extended family' with the same condition.

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