{"id":2232,"date":"2018-06-30T08:00:35","date_gmt":"2018-06-30T06:00:35","guid":{"rendered":"https:\/\/wilmawestenberg.nl\/?p=2232"},"modified":"2021-01-04T00:06:10","modified_gmt":"2021-01-03T23:06:10","slug":"meeting-janneke","status":"publish","type":"post","link":"https:\/\/wilmawestenberg.nl\/meeting-janneke\/?lang=en","title":{"rendered":"Meeting Janneke (23) in the Netherlands"},"content":{"rendered":"\n

I don’t know where to start with one of my most bizarre stories ever. After 23 years I found a Dutch girl with FIL.. and she only lives 10 km (6 miles) away from me. YouTube’s algorithm showed me an old tv show about Janneke and I immediately contacted her via Facebook. A few days later we were having lunch at a local restaurant.<\/p>\n\n\n\n\n\n\n\n

Janneke on local tv<\/h2>\n\n\n\n

I was watching some videos on YouTube when I noticed a thumbnail: it showed a cute little girl with a bigger cheek. It turned out to be an old Dutch tv item<\/a> about Janneke which I hadn’t seen before. She was diagnosed with hemifacial hypertrophy, which is a difficult way to describe that half of the face is bigger. When I saw Janneke’s baby photos and heard her story and, I immediately knew it had to be FIL.<\/p>\n\n\n\n

\"Baby
Thumbnail of baby Janneke that caught my eye<\/figcaption><\/figure>\n\n\n\n

Contact via Facebook<\/h2>\n\n\n\n

I found Janneke on Facebook and sent her a message. I didn’t know what to write, because if you have been diagnosed with hemifacial hypertrophy for 24 years and suddenly receive a message from a stranger who claims otherwise.. I would be sceptical! I explained Janneke that I recently had been diagnosed with FIL and advised her to visit my new doctor for a second opinion. Janneke was interested in what I had to say and became curious. Guess what? Janneke was living in Wageningen at that time, only a 10 km (6 mile) drive from Rhenen. We decided to meet and a few days later we were having lunch in Wageningen.<\/p>\n\n\n\n

Same condition, same age, different doctor<\/h2>\n\n\n\n

We were born in the same year, but ended up with different (local) doctors. Janneke has been through a lot and has undergone more than 20 surgeries and procedures in Rotterdam. After our conversation, she visited my new doctor in Nijmegen. They did a genetic test which confirmed that Janneke indeed has the same PIK3ca gene mutation as I. I officially have a Dutch FIL sister!<\/p>\n\n\n\n

\"Wilma
Our first meeting at Brownies & Downies in Wageningen<\/figcaption><\/figure>\n\n\n\n

Janneke’s lookalike<\/h2>\n\n\n\n

Our Spanish ‘brother’ Samuel from Madrid<\/a> looked a lot like Janneke as a baby. The baby photos are indistinguishable and they even had the same baby blanket haha. Samuel will be coming to the Netherlands soon and Janneke can meet her lookalike!<\/p>\n\n\n\n

More people with FIL in the Netherlands? <\/h2>\n\n\n\n

I always thought I was the only one in the Netherlands, but after this story I am sure there must be many more Dutch people. They most probably do not have a diagnosis yet (it took Janneke and me 22\/24 years\u2026) or they have a wrong diagnosis (such as hemifacial hypertrophy and hemifacial hyperplasia). It’s my goal to find them.<\/p>\n\n\n\n

> Click here for Janneke’s tv item (which is in Dutch)<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

I don’t know where to start with one of my most bizarre stories ever. Thanks to YouTube’s algorithm I found Janneke (23) who has FIL. And the craziest part? We only live 10 km (6 miles) apart.<\/p>\n","protected":false},"author":1,"featured_media":2225,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[183],"tags":[],"jetpack_featured_media_url":"https:\/\/wilmawestenberg.nl\/wp-content\/uploads\/2021\/01\/2018-Hevas-ontmoetingsdag-Rhenen-met-Janneke-Facial-Infiltrating-Lipomatosis-a-PIK3ca-Related-Overgrowth-condition-PROS-syndrome-1.jpg","yoast_head":"\nMeeting Janneke (23) in the Netherlands - Wilma Westenberg<\/title>\n<meta name=\"description\" content=\"Facial Infiltrating Lipomatosis (FIL), is een ultra zeldzame aandoening in de wang en de helft van het gezicht met slechts een handjevol pati\u00ebnten wereldwijd. 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