Philanthropist's Forward

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.

Potential Diagnostic Methods

Diagnosing lipedema is exasperating. On one hand, we know it when we see it but on the other hand, there is no test that a physician can send out for. There are no known genes, no blood tests, and no accepted imaging modalities. Yet.

Some clinicians require pain in order to make the diagnosis.

Some clinicians require swelling in order to make the diagnosis.

Some clinicians require a different texture in the fat in order to make the diagnosis. Although these nodules can be felt by hand, even in early stages, there is no way to 'see' them without cutting into someone.

But the photos of lipedema show the same features:

  • Disproportion between abdomen and limbs

  • Normal feet with an increase of fat at the ankle

  • Fat pad inside below the knee

  • Inner upper thigh hang

  • Fat pad overhanging the knee

  • Lax skin and joints

So we can see it with our eyes. And we can feel it with our hands. But why can't we get a confirmatory test?

We'll get there. In the mean time, please review this and send feedback: diagnoses