Lipedema Research

Frequently Asked Questions

Have questions? We have answers.

What is Lipedema?

Lipedema is a chronic disorder characterized by an abnormal accumulation of fat cells primarily in the legs and sometimes arms, resulting in a disproportionate appearance. It almost exclusively affects people assigned female at birth.

What causes Lipedema?

The exact cause is unknown, but it is believed to be related to hormonal changes and genetics. Potential triggers include puberty, pregnancy, and menopause.

How is Lipedema diagnosed?

There is no single test to diagnose lipedema. Diagnosis is typically based on the characteristic appearance and pattern of fat distribution, physical exam including palpation of nodules, along with ruling out other conditions like lymphedema or obesity.

How many people have Lipedema?

Based on current research, we estimate that 11%-16% of adults assigned female at birth have lipedema, meaning it’s between 12 million and 17 million people. We know lipedema can start even before puberty now, but do not have research-based estimates for how many adolescents are affected at this time.

What are common symptoms of Lipedema?

Common symptoms include a bilateral and symmetrical accumulation of fat in the legs and sometimes arms, with the feet often spared. The fatty areas are tender and bruise easily. Pain, heaviness, and easy bruising in the affected areas are also common. There are more symptoms like fatigue that you can learn about in other pages on our site.

Is there a cure for Lipedema?

There is no cure, but treatments aim to manage symptoms and prevent progression. These may include compression garments, lymphatic massage, exercise, and in some cases, liposuction surgery.

FAQs about Research Publications

Does the American Lipedema Association Perform Research?

No. The American Lipedema Association does not directly conduct or fund research into lipedema. Instead, its primary role is to serve as a resource hub, connecting patients with existing educational materials, support groups, and medical professionals who specialize in treating lipedema. Additionally, the ALA aims to raise awareness about the condition and amplify the millions of voices of lipedema patients to authorities making decisions on our behalf. By disseminating available research-backed information, the American Lipedema Association strives to empower patients and facilitate their access to appropriate care and support networks.

What Publications does the American Lipedema Association Create?

American Lipedema Association publications focus on sharing patient stories, opinions, experiences, and survey results related to living with lipedema. These types of publications could include:

  • Patient testimonials and first-hand accounts of navigating the challenges of lipedema, such as the diagnostic journey, managing symptoms, and coping with the condition’s impact on daily life.
  • Opinion pieces and perspectives from patients, highlighting their views on topics like access to care, treatment options, and raising awareness about lipedema.
  • Compilations of patient experiences, showcasing the diverse ways lipedema manifests and affects individuals, as well as their strategies for managing the condition.
  • Summaries and analyses of patient surveys, providing insights into the common symptoms, comorbidities, and quality of life issues faced by the lipedema community.

By amplifying patient voices through these types of publications, the American Lipedema Association aims to raise awareness, foster a sense of community, and advocate for better understanding and support for those affected by lipedema.

What Resources does the American Lipedema Association Share?

When it comes to research-based information, the American Lipedema Association’s role is to guide patients to reputable sources and encourage them to consult with qualified medical professionals who can interpret and discuss the latest research findings and their implications for diagnosis and treatment. Examples include:

  • The Lipedema Foundation is a well-established private foundation dedicated to funding lipedema research, with over $11 million awarded to date for studies across various disciplines related to understanding, diagnosing, and developing treatments for lipedema. As the world’s largest funder of lipedema research, the foundation’s mission and substantial financial commitment demonstrate its credibility and reputation in advancing knowledge about lipedema.
  • Peer-reviewed medical journals and publications from respected academic institutions and research organizations.
  • The “Standard of Care for Lipedema in the United States” published in the journal Plastic and Reconstructive Surgery in 2022 is an authoritative and comprehensive resource that provides evidence-based guidelines for the diagnosis, evaluation, and management of lipedema. This peer-reviewed publication, developed by a multidisciplinary team of experts, represents a significant milestone in establishing a standardized approach to lipedema care, addressing a critical need for healthcare professionals and patients alike. It is located here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8652358/
  • Educational resources and materials from recognized lipedema experts, specialists, and treatment centers with established expertise in the field.
  • Consensus documents from the Lipedema World Alliance.
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