by Felicitie Daftuar
(The following was also used as the forward in the Milken Institute's Giving Smarter Guide for Lipedema.)
I was told to stop having children by the first therapist who confirmed my suspicion of lipedema. I was told to go to Germany, get liposuction and wait 18 months before continuing to have children by an expert. I was told by my amazing GP that the lump of fat and fluid under my knee was postpartum depression, even though I wasn't depressed.
I hired a concierge medicine company to investigate 1) Is lipedema a real thing? 2) Do I have it? 3) What should I do about it? Months later: Yes, Yes, We don't know.
So I did what others before me did. I searched Pubmed and Google Scholar for research papers. I read some of them. I put them in a spreadsheet.
I joined Facebook groups and LinkedIn-ed people I thought would help. I went to patient, researcher, and therapist conferences. I helped resurrect a defunct non-profit, the Fat Disorders Research Society, and the team set up a website and hosted 2 patient conferences (one with 270 attendees!).
In 2015, I narrowed my focus to research, started the Lipedema Foundation (LF), and started funding research projects.