Hi my name is Simone and I am new to this site but so glad to have found it. I have been serching for something like this for a long time.
My son Reuben was born (17 months ago) with an extensive venous malformation of his left shoulder, arm and hand. We had no idea until he was born they thought he was bruised. At 2 days old we were taken for an ultrasound and told it is a varicositie. We live in Perth (Australia) and have to travel to Sydney to see our Doctor. He is not suitable for scerolotherapy or laser surgery. He wears a pressure garment for 23 hours a day to help with blood clots. He is a lovely happy little man
Nobody else I Perth has one of these as far as I am aware. I would dearly love to talk to anybody dealing with anything similar. Either other parents or adults that have something similar.
I am definelty wanting to learn more and help spread awareness of vascular birthmarks.