When I was twelve, I started my website about my unknown tumor in my cheek in the hope of ever getting a diagnosis – and to dismiss rude people who asked for the umpteenth time what had happened to my face. Every now and then I received some advice via my website. A few times Hecovan was mentioned, an expertise centre for Hemangiomas and congenital vascular malformations. They specialize in something different than my condition, but I realized that I had a greater chance of success at Hecovan than visiting a random local surgeon without any knowledge in this area.<\/p>\n
I had to get a MRI anyway – my last check-up was more than three years ago. I also had questions about the heredity of my condition. When I again received\u00a0an email in which Hecovan was mentioned, I decided that it would not hurt to change hospitals and get a second opinion with the Hecovan working group.\u00a0<\/strong><\/p>\n The referral via my gp for a hereditary examination, MRI scan and second opinion at Hecovan was arranged without problems. In February 2017, it was my turn. I took my parents with me – after all, they know everything about my childhood and medical file \u2013 and also Koen joined my hospital visits for the first time. That turned out to be a great idea, because there was lots of technical explanation about DNA, mutations and sequencing, which is actually Koen\u2019s field of expertise.<\/p>\n They made an ultrasound of the\u00a0tumor in my cheek\u00a0and afterwards we had an introductory meeting with Dr C van der Vleuten. We talked about everything that happened the past 22 years, including inexplicable things that were not related to the tumor in my cheek according to other doctors. Like my jaw that grows differently. Dr van der Vleuten discussed my file with her team and called me a few weeks later to discuss their findings.<\/p>\n Koen was sitting next to me when I received a phone call from the hospital. Dr van der Vleuten explained that it took a while for them to find a diagnosis, but in the end they came across a condition called Facial Infiltrating Lipomatosis (FIL). Partly due to my unique jaw problems, they found a match with this condition. Turns out we were always right that my jaw problems \u2013 and some other things\u00a0 – were related\u00a0to the tumor in my cheek after all. The team had never heard of FIL before and did not know anyone else with this diagnosis. They first had to read more about this condition. A new phone call was scheduled and a few weeks later Dr van der Vleuten called me with her findings. She was very sorry to\u00a0inform me that there is nothing that can be done. She apologized and said they would have loved to help me in any way possible. But to be honest, I wasn\u2019t expecting anything else. I didn\u2019t even want to do any interventions. The only thing I was hoping for was a diagnosis – a name that would allow me to search on Google. And they gave me that!<\/p>\n Dr van der Vleuten\u00a0told me about a kind of chemotherapy that is currently being tested in other similar conditions. The chemotherapy does not solve it, but it can inhibit growth. This could be useful for kids whose tumors are actively growing. However, she told me this drug is still in an experimental phase and is only recommended to people who really do not have another choice. It\u2019s good to know that they are working on experiments though and I will definitely keep an eye on the developments of this drug.<\/p>\n > Read my summary about FIL here<\/a><\/p>\n The following weeks I started searching on Google. There is not much to find: well counted 13 pages. It was not until page 6 that I came across an interesting blog<\/a> made by a mother of a 10-year-old girl with the same condition. I contacted the mother and we started chatting via Facebook. She added me to a\u00a0private group on Facebook with 4 other mothers of children with this condition. One of the most bizarre moments in my life. For 22 years I was ‘alone in the world’ and now I suddenly saw 5 pictures of children who were copies of me. Any doubts I had about my new diagnosis disappeared thanks to this group (you become skeptical after 22 years of no\/wrong diagnoses).<\/p>\nSecond opinion at Hecovan<\/strong><\/h3>\n
![\"echo](\"http:\/\/wilmawestenberg.nl\/wp-content\/uploads\/2018\/02\/echo-scan-Facial-infiltrating-lipomatosis-tumor-in-cheek-diagnosis-after-22-years-of-searching.jpg\")
<\/p>\nWe think we found it..<\/strong><\/h3>\n
And so the journey begins..<\/strong><\/h3>\n