Hi Lisa, I did some research on the vascular doctors in my insurance plan, and one of them was a lymphatic specialist (he had clinical interests in lymphedema, and had published some research studies on lymphatic diseases). I thought he might know lipedema, and I was right. He diagnosed me after a physical examination, and after chatting with me about symptoms and my family history. There isn’t one online resource that’s the main source of truth, and the information is a bit scattered. The best thing for me so far has been participating in the Facebook groups (I highly recommend “Lipedema Sisters USA” and “Liposuction for Lipedema”). We’re always exchanging the latest on the disease, as well as personal experiences of things that have worked (or not) for us. I also keep an eye out for research studies about the disease, and I read everything Dr. Herbst publishes. She’s been doing some videos too during quarantine which have been helpful.

I’ve also started a website, Instagram and Facebook page called Fuck Lipedema in which I share a lot of educational material.