Lipedema Research Challenges
Absence of diagnostic tools
Diagnosis of lipedema involves a clinical assessment and discussion of the individual’s medical history, a process that is difficult to scale within the current healthcare system. The absence of diagnostic tools to streamline or confirm a clinical diagnosis is a key unmet need, which if addressed by research, has the potential to dramatically change the trajectory of the disease. More on diagnosis.
Limited disease biology
Little is known about how and why lipedema develops in a patient.
Although the disease is reported to occur during puberty and other periods of hormonal changes, why this happens is not understood
The painful fat and swelling in some patients can be so debilitating that their mobility is impaired; yet what drives these symptoms is unknown
Psychosocial issues are also prevalent in women with lipedema, contributing to health burden and complexity of disease management
Many patients develop the disease alongside obesity; however, diet, exercise, and weight loss surgery have limited effect on lipedema fat
Although the lack of disease biology is staggering, research efforts can leverage the desire of patients to participate in studies to improve their and the entire field’s understanding of lipedema. The convergence of multiple scientific topics around lipedema indicates that addressing these gaps in research will also improve the understanding of hormone, pain and edema, mental health, and metabolic biology. For more on disease biology...
Building the lipedema research network
Established in 2015, LF has committed over $6 million research dollars towards defining, diagnosing and developing treatments for lipedema. Our research program currently supports basic, diagnostic, genetic, and clinical researchers, as well as the University of Arizona's TREAT Program and Tissue Biorepository. For more on our grantees.
Informed by the unmet needs and key research efforts identified by our 2016 Lipedema Scientific Retreat, our 2017 funding cycle has recently launched 26 new projects aimed at defining the lipedema research space.