first time on this forum
Hi, I've just found out about this disease, it explains my poor health. I was born with port wine stains all over my body. They almost all disapeared except for one on my back and my face is split in the middle red/white. Also, I had a stawberry on my head and was removed 18 years ago because in adulthood experienced a rapid growth. Know, I'm having complications because of the operation and have lots of symptoms: migraines, absences, intestinal problems, muscle pain, burning all over and it's getting worst. Lately, port wine stains come and go, mostly in my back and neck. The difficult part for me is lack of concentration which is getting worst rapidly. My english might not be always adequate as I am french speaking. Would like to hear from someone with similar story.
Thanks for this forum, I don't feel like an alien anymore!