March 2017 I met Vela, my 3-year-old mini-me (doppelganger) who lives on the other side of the world. We were born with the same rare benign tumor in our face and both have blond hair and blue eyes. It’s incredible to meet a cute mini version of myself. Read more about our meeting.
Hi there! |
Hi all, In my previous blog post I mentioned that I met people with the same condition. The last two months I have met five people while staying in the USA. One of them was Josie, a 10 year old FIL-sister from Iowa.
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.
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.