Thursday was a special day for me and all the people (and their families) that suffer from an overgrowth syndrome caused by the PIK3CA gene. A new medicine has been tested on patients with a similar condition and show very promising results.
Hi there! |
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 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.