A Klippel-Trénaunay-Weber Syndrome story

I was diagnosed with KTW from 3 days old. The whole right side of my body is affected along with one of my fingers and one of my toes on the left side of my body. My whole body suffers from Deep Vein Thrombosis and superficial thrombosis, lymphedema, vascular abnormalities, arthritis, curved spine, a brain aneurysm, birthmarks (80% of my body).

In 2015 I formed a DVT in one of the veins leading to my liver which has resulted in low liver function and ascites in my abdomen. Amongst trying to diagnose and solve my liver problems it has also been discovered that I have very low iron and my white blood cells are love also. I see a vascular specialist, a hematologist, a liver specialist and gastro specialist. I am lucky to have a great vascular specialist (dr Jason Jenkins) that looks over all of my issues (not just vascular) and ensures I am seeing the best specialists.