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.
But I kept coming up short. How could a disease that's seemingly everywhere have so little published? Sure there are some descriptive papers, case reports, and studies with a few patients. There are even literature reviews. But no pathogenesis. No genes. No blood test. No biomarkers. No replicable imaging test. Nada zip zero. I couldn’t find answers to my questions about lipedema.
Why are pain and swelling (which are subjective) recognized criteria of lipedema, but the physical change in the texture of the fat is not?
Why are there only 5 US physicians willing to diagnose lipedema, but there are 12 surgeons willing to operate, 100s of therapists willing to treat, and 2,000 patients participating in Facebook groups?
Do my relatives have it? Are my 3 daughters going to get it? How could it be that I carried 3 children, and my abdomen looks better, but my legs look worse? Is it a disease? A condition? A syndrome? I don't feel sick, but my body is different.
Why can I feel nodules of fat in my legs, but no one can image them with ultrasound, MRI or a highly technical piece of equipment?
Why is it that if I cook healthy meals and exercise the right way, I don't have pain, but if I go on vacation my legs burn when I lay down at night? Do I really need liposuction if my BMI is in the 20s?
Will it get worse? Will it get better? Will it ever go away? How is lipedema different from lymphedema, obesity, lipodystrophy and Dercum’s Disease? Is the prevalence really 11% of post-adolescent women? Or 5%? Or 1%? How was I now one of the world's experts in a medical condition?
Along came a small band of heroes. People who had seen this before. People who thought I wasn't crazy for hunting for answers. People who raised the level of discourse around something that had been predominantly patient-led discussions. People who know the ins and outs of the typical disease path from diagnosis to treatment to cure.
The Milken Institute’s Center for Strategic Philanthropy (CSP) opened doors I couldn't. They persevered through setbacks that were tough for me to deal with. They remained objective and focused, diving down deep into many facets of the biology and then resurfacing to put the big picture together.
CSP could talk to researchers and doctors on their level. They could assess which expertise of researchers were needed in order to move forward, and brought 20 different specialties into the conversation. The heroes are so well networked around DC that they could get both the NIDDK and NHLBI represented at our first ever Lipedema Scientific Retreat. They invited me to sit at tables with other people like me.
They kept my expectations grounded and at one point told me: we are at the very beginning of the course of this disease; we know nothing. But they provided a direction and tools to move forward, via both this Giving Smarter Guide and an invaluable private report identifying names, tools, and projects. I became we. We went to conferences and called people around the world. We worked together. We wondered together. We opined together. We hosted a meeting convening a global cohort of the best-of-the-best and, and together at the Scientific Retreat, we mapped out the gaps in the field of lipedema research so that we could collaborate and coordinate the research needed to define the space.
We have chosen to strategically address key research challenges of lipedema. For the short term, LF's first priority is the science behind the cause(s) of lipedema. We cannot do meaningful research into lipedema treatments until we understand the scientific cause(s) of the condition. There is a lack of scientific consensus on the most basic elements of this disease, and LF has set about to fix that. We can’t get anywhere until we tackle the fundamentals.
Please, read on and become part of our journey. Take notes and jot down ideas, then call LF. We'll be happy to talk to you about your ideas to move this forward. We have a long road ahead of us and we'd like your company, because it takes a village to move diseases forward.
Felicitie Daftuar, Founder and Executive Director, Lipedema Foundation