The Lipedema Foundation, the world's largest funder of Lipedema research, has published "Learning By Listening: The LF Registry First Look Report," initial findings from its patient registry focused on the experiences of people living with Lipedema. This chronic medical condition, which primarily impacts women, is characterized by a symmetric build-up of adipose tissue (fat) in the arms and legs.
GREENWICH, Conn., Sept. 12, 2022 /PRNewswire-PRWeb/ -- The Lipedema Foundation, the world's largest funder of Lipedema research, has published initial findings from its patient registry. "Learning By Listening: The LF Registry First Look Report" focuses on the experiences of people who have Lipedema and the challenges that they face living with this chronic medical condition that primarily impacts women.
Lipedema is characterized by a symmetric buildup of adipose tissue (fat) in the legs and arms, often with pain, and at advanced stages, impaired mobility.
In 2019, the Lipedema Foundation launched the LF Registry, an online database to learn more about Lipedema and its impact on individuals, families, clinicians, and researchers. The "First Look Report" analyzes data from the first 521 completed Registry surveys from people who have either been diagnosed with Lipedema or have symptoms that lead them to believe they have the condition.
Lipedema is a widespread but underdiagnosed condition. Currently, there are no diagnostic tests to determine if a patient has Lipedema. The Lipedema Foundation is a non-profit organization, funding research to define, diagnose and develop treatments for Lipedema.
"While we do not have a diagnostic test and the full range of treatments is unknown, what is clear is that the physical and emotional burden of Lipedema exists for patients for many years before it is first diagnosed or treated," says Jonathan Kartt, Chief Executive Officer of the Lipedema Foundation.
Key findings of the "First Look Report" include:
- Symptoms often appear during puberty: Almost 58% of participants first noticed Lipedema symptoms between the ages of 10-19 years, most between ages 12 and 14
- Hormones may play a role: 10% of participants experienced first symptoms around other times of hormonal change, such as pregnancy (4.5%), and menopause (5.5%)
- Long delays between onset and treatment: Although Lipedema may appear early in life, the average age of diagnosis is 48 years old, and women sought medical attention 17 years after first noticing symptoms
- No standard path to diagnosis: Most participants (59%) had received a diagnosis from one or more health care professionals. Of these, 63% had received a diagnosis from a non-surgeon medical doctor. About a third (32%) had received a diagnosis from a surgeon
- Consistent pain: Average daily pain for most participants was five on a 10-point pain scale
- Top systems are leg heaviness, fatigue, and easy bruising: These symptoms occur with frequency and some severity, with leg heaviness (65%), fatigue (54%), and bruising (50%) reported as being "very severe"
- Runs in families: Nearly all (94%) of the participants report a family history of Lipedema
The report also found that people with Lipedema experience numerous comorbidities, including obesity, which was self-reported by 73% of participants. Other comorbidities reported include spider veins (48%), Irritable Bowel Syndrome (IBS) (20%), and Ehlers-Danlos Syndrome-Hypermobility (12%).
Lipedema is often misdiagnosed as obesity or lymphedema, but there are important differences between these conditions. In obesity, fat occurs throughout the body, while in Lipedema, fat typically occurs in the limbs, sparing the hands and feet. In lymphedema, swelling usually affects only one side of the body, and includes hands and feet. In addition, unlike Lipedema, lymphedema can be diagnosed with imaging or genetic tests.
The Lipedema Foundation partnered with RTI International, a nonprofit research institute based in Triangle Park, NC, to analyze the data. "The First Look Report is a tool that can be used to advance Lipedema awareness, understanding and care," says Stephanie Peterson, Data Manager, Lipedema Foundation. "The next step is to challenge healthcare professionals to recognize and treat Lipedema and stop dismissing patients when they seek care."
The Lipedema Foundation engages researchers to develop and expand the Lipedema scientific community. In recent years, due to growing awareness and interest in the condition, there has been a surge in Lipedema research, with the Lipedema Foundation funding about 20% of the work published.
"An acceleration of research is needed as we seek to evaluate existing treatments," says Kartt. "A future of accessible and evidence-based approaches to diagnosing Lipedema requires a better understanding of the disease and the various impacts of Lipedema on patient lives."
Learn more about the LF Registry findings and download a free copy of the 16-page report. Watch the What is Lipedema? video to learn more about the condition.
ABOUT THE LIPEDEMA FOUNDATION: The Lipedema Foundation is a private, non-fundraising foundation established in 2015 to define, diagnose and develop treatments for Lipedema. It has awarded more than $11 million in the US and internationally to date and maintains the Lipedema Foundation Registry.
ABOUT LIPEDEMA: Lipedema is a chronic medical condition primarily impacting women and characterized by a symmetric buildup of adipose tissue (fat) in the legs and arms, often with pain and, at advanced stages, impaired mobility. It is frequently misdiagnosed as obesity or lymphedema, though Lipedema is resistant to exercise and diet. Lipedema is widespread, affecting millions of adolescent and adult women, but is vastly underdiagnosed. Awareness is increasing; progress includes the American College of Cardiology and publication of a standard of care in the United States.
Find out more at lipedema.org.
Media Contact
Kathy Doherty, Lipedema Foundation, 1 203-489-2989, [email protected]
Jonathan Kartt, Lipedema Foundation, 917-938-3422, [email protected]
SOURCE Lipedema Foundation
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