Wilma Westenberg - Facial infiltrating lipomatosis, ultra rare condition tumor in cheek

Diagnosed after 22 years of searching

For more than 22 years I have been living with the consequences of a visible tumor in my cheek while I did not even know what I had. And I can tell you, it feels very lonely to be ‘the only one in the world’ with this rare condition and unique appearance. I gave up hope for help years ago, but hoped to get answers to my questions one day. In 2017 I did a second opinion, got diagnosed and was no longer alone.